Moment of Truth

Nerves are a mess. Keep watching the clock for the time I have to leave. I have to take dad for yet another run up to North Surre, to the Jim Pattison clinic for his biopsy. The anxiety and stress are working their magic yet again. I can't hardly lift my arms. I'm regretting the chocolate chip cookies I just made and sampled, as they are sitting in my throat. I am sooooo soooo tired of this stress. I can only wonder what it is doing to my health.

Just breathe.

(Sometime later that day...)

Post-biopsy, the doctor said that the 'spots' don't seem to be as prominent as before, so hopefully it's all benign. Of course we won't know until the results come back in a week to a week and a half. Fingers and toes are crossed. Am expecting a positive result, as it was the camera that found the spots, and there are not actually any symptoms of cancer. It's a roller coaster of emotion trying to prepare for either outcome... the moment of truth remains elusive.

The Great Pill Debate

It is.
It isn't.
It is.
It isn't.
I'm telling you it is. I remember exactly putting it there.

And that's how my morning started. And for the last who knows how many mornings. Half an hour argument over some little pills.

See, dad has to take pills to manage his Parkinson's. 8, 12, 4 and 8. When mom passed away, he was doing them himself. Which involves; getting the prescription from the doctor, getting the prescription filled at the pharmacy, filling the dossets at home, and then taking the medication on time, every time. Because ...

So it went this way for a while, until he started to get confused about that, so I took over. (blister packs don't work because of the motor skills required. Pill dispensing machine available but you have to be at home to take the pill when it dispenses. Dad doesn't remember pill times - so he could very well be out at the time... and there's no option to take one with you.)

I was getting the presciption filled at the pharmacy, then measuring out the pills into weekly dosets which sat out in the counter. In about October last year, this became too overwhelming for dad, and he was getting into the next days pills and double-dosing.

Alarms are set for the pill times, but found he was ignoring the alarms. So I call him 4x a day at 8 12 4 and 8 to ensure he gets that pill into him.

Anyway - a call to the Nurse Next Door determined that the pills needed to be put away, save for the current day. That would take away some of the confusion, or would it? I was still calling him at the times, but he was looking at the time of day, and getting confused and taking doses off time, skipping them or double-dosing.

Another call to the NND, another home visit and it was determined that the pills should be brought down one at a time, and they'd arrange their nursing care around 2 pill times, (which was also around meal times which was helpful as he ...) to ensure those ones were taken, and to bring down the 8pm pill.

So I would still be calling 2x a day: in the morning and at night. So that I wouldn't have to be there at 8am, I'd bring that pill down and hide it in a cup in the cupboard to be taken the next day. Which worked for a while, but then it backfired. I don't know why he remembered that pill was there, when he didn't remember anything else. But remember he did. He got into that cup and took that pill whenever the mood stuck. I found out last weekend that he took the 8pm pill at 8pm, along with the 8 am pill for the next day.

Now what?

I started hiding the pill around the kitchen, trying to outsmart him. I suppose I could tromp over there every day at 8am to give him his pill. But sorry, my life has been impacted enough. I'm already over there once a day to get the pills prepared for the following day, do I really need to go over at 8am?

Maybe it would be simpler though. Because this week has digressed into
It is.
It isn't.
It is.
It isn't.

How does that not end up in an argument? I know where the pill is hidden - pretty much in plain sight. After me explaining where it was 5 times, and 3 hang ups... he called me to tell me he'd found the pill.

Right where I told him it was in the first place.

Uh oh! Falling into the naughty expression of, "I told you so."

To Be or Not to Be

Still no confirmed answer in a forward move to Australia. Did I honestly think life was going to be that easy? You’d think I’d have learned by now.

The following was written after the July 15th follow up visit to a specialist. You see, dad had some routine procedures carried out, and in the meantime, they found some questionable spots in the camera. We had to go back to the specialist’s office to discuss forward steps from here, and a biopsy has been booked for early August. I had hoped to be in the final packing stages by then… not taking yet another trip to the hospital.

“We sat down with the specialist and he told us what's going on with dad. I told him what our plans are, in moving to Australia. And that it needs to be done soon because of dad’s deteriorating condition. Dad needs a biopsy done to determine what the spots are. They’re 70% sure it’s not cancer, but want to confirm that. The specialist was great, and understood the gravity of the issue of getting dad taken care of as soon as possible, and not waiting around for another 6-8 weeks for more procedures. He got us in on August 2 at the hospital for the biopsy so that we wouldn't have to wait for a spot at the clinic. We then we have a follow up appointment on Sep 1. It can’t be sooner as the doctor is away on holiday in August. If he sees something scary, he'll be letting us know in the biopsy, or shortly thereafter. I am going to ask him at the biopsy if I can book flights and moving company for mid-September. I guess if the news comes back on Sep 1 that it is cancer, we will have to postpone/cancel plans at that time. But I don’t really want to put off the move much longer, or dad won’t be able to go. As it is now, we’re pushing it."

I can’t believe we have the threat of cancer hanging over our heads. Mom’s heart attack and dad’s Parkinson’s and Lewy body disease has been enough to bear without adding another major disease to the mix. When the specialist told me during the last procedure that he found “questionable spots”, I sobbed all the way home. Not sure how much more we can take. I guess the good news if it is cancer is that it’s treatable and survivable…. but it’s still the dreaded ‘C’ word. There will be more appointments and procedures to organize and attend. The doctor’s visits compound as the months go by and it consumes more and more time.

Do Not Disturb

After a busy, back breaking week at dad's, plus a way too busy social calendar, all I asked for was a little peace and quiet on Sunday to think for myself. However, the home phone rang off the hook and sent me over the edge. Between texting, Facebook, home phone, cell phone, Skype, email ... there is never a quiet moment where you're not communicating with someone. There is so much to do, not to mention the emotional toll I am under, I can't cope with it anymore. I have a big pool design that needs to be done asap, on top of dads care and preparing two people for an international move. I cannot deal with any more requests right now.

On top of that... I've been so focused on everyone else - at the end of the day, I'm still on my own. Time to focus on myself and my career.... Not a stay at home mom, don't have anyone to foot my bills. Time to focus on myself. Not selfish, but realistic.

Lewy What-y!?

You have to love doctors! They've often slotted important news into the middle of a sentence and you're left to say, "Sorry, what was that, can you please go back!"

In the middle of a routine visit with the elder care doctor, she made some comment to the effect of, "Well, with dementia patients... blah blah blah."

All I heard was the word "dementia". I mean, I had suspected it, how could you not! I didn't know there was a diagnose. I had come into dad's care part way through and was left to fumble my way through.

So in a routine visit with the neurologist, he casually inserted the phrase "Lewy body disease". Say what now? I had the doctor right it down on the back of a prescription form and looked it up online at home. Again, love the Internet!

Lewy body disease, or Dementia with Lewy Bodies (DLB) symptoms are dementia and hallucinations, along with other Parkinson's symptoms. It's best not to listen to me though, and read the description at Wikipedia.

I recalled back to when dad was first diagnosed with Parkinson's... we were told he had an aggressive form of the disease. Indeed, people often commented to me that dad didn't display typical Parkinson's symptoms. True, he had all the secondary symptom's, which I posted about in the previous post here... e didn't display many of the primary symptoms, however. His muscles never seized up on him, and apart from a slight tremor in his pinkie finger he didn't shake at all.

This is where it gets confusing for me. (Not that it takes much these days!) The neurologist informed us that Parkinson's can take many different routes (see note below), and for some Parkinson's patients, that can mean dementia, and Lewy body disease. However, some research online claims that Lewy body disease is a disease unto itself and overlaps symptoms with Parkinson's and Alzheimer's disease. All I know is that my dad experiences visual hallucinations, along with the other symptoms of both Parkinson's and Lewy body disease... and that I cannot give him the full care he needs.

A word on the many different routes of Parkinson's disease: one thing that Parkinson's patients all have in common is that the disease effects every person completely differently. One patient might struggle with Bradykinesia, while the other might have fluidity of movement, yet suffer from hallucinations. I am not a proponent of support groups for myself. Firstly, the last thing I want to do after I get a break from the situation, is to go talk about it some more. I'd rather put my head down, get done what needs to be done, and then take some time out for myself. Also, from the beginning, we were on a need-to-know basis. Because of all the different symptoms of the disease, I didn't want to worry about one thing (rigidity), while completely missing another symptom that was bubbling under the surface (hallucinations). I'd rather deal with it as it comes.

Parkinson's Disease

'Do you think your dad has Parkinson's Disease?' mom asked me one night in the fall of 2003. I had recently read the Michael J Fox biography on his struggle with the disease, so it was fresh in my mind.

'I'll be right back.' I dashed off to the computer and did some research on it. (What WOULD we do without the Internet!!) On one of the sites, there was a 12 question Parkinson's quiz. I remember going through the questions and getting 10/12 right. I went back to mom and said,' I think you're right.'

Dad went to the neurologist in Nov 2003. (Three days after my maternal grandma's funeral.) I came home in the afternoon following the appointment and asked dad what the diagnosis was. He said, 'I have good news and bad news. The bad news is I have Parkinson's. The good news is that you don't die from it.'

No, but you have to live with it.

Parkinson's Disease is thought to be low levels of the chemical, dopomine, which tells the body to move. Dopomine is the chemical that allows our bodies to move in a smooth, controlled way. When 70% of dopomine-producing cells are damaged, that's when the Parkinson's symptoms occur.

Primary Symptoms
- Tremor
- Rigity or stiffness
- Bradykinesia
-Poor balance

Secondary Symtoms
- Constipation
- Difficulty swallowing
- Choking, coughing, or drooling
- Excessive salivation
- Excessive sweating
- Loss of bowel and/or bladder control
- Loss of intellectual capacity
- Anxiety, depression, isolation
- Scaling, dry skin on the face or scalp
- Slow response to questions
- Small cramped handwriting
- Soft, whispery voice

I'm not the Parkinson's expert (though I appear to be working on it!!)... so here are a couple of links for further information on the disease:
National Parkinson's Foundation: http://www.parkinson.org/
Michael J Fox Foundation: http://www.michaeljfox.org/

A Day of Rest

Kind of.

See, I've been living in the middle of a construction zone since January; original story posted here. They started the development in January, then the house construction in the middle of May. The City of Surrey allows home construction from 7am to 10pm, Monday through Saturday. That's pretty much how long it has been going on for... 13 hours a day, 6 days a week. Hammers, saws, machinery, trucks, yelling... endless noise. You can see by the hours allowed, that when you live next door to a constuction site, you don't get a break from the noise. So much for the City of Surrey proclaiming that every individual has the right to quiet enjoyment in their home. Unless you live next door to a construction site. Then you can pretty much guarantee noise for 12 months straight.

Yesterday, I honestly thought I was going to be committed to the mental institute. They were running a compactor on one of the houses across the street till 9pm. Not sure if you've experience the joy of a compactor, but having lived through three construction waves, I am up close and personal with it. It lets off a charming noise the whole time it runs, and it shakes the house on the foundations. You can be working in the kitchen and the whole floor vibarates under your feet. Which is very unnerving. Especially when you're also suffering with the weather, and a father who is driving you to the brink of insanity.

I say that it was kind of a day of rest, as I still had to deal with dad, and three arguments over pills today... 8am, 12pm and 4pm. I called to get him to take them at each time, and he said that he had, that he hadn't. I didn't know where he was at. I have to put the pills in hidey-holes on the Sunday's when the nurses aren't there. It's the only way I know of, short of going over there, that he's got the pill into him. I can't leave them out, or he'll eat them like Tic Tacs. I call him at pill time and tell him where the pills are. He finds the pills, and takes them. Or not. I finally had to go over there at 4.30 to see where he was at. Sure enough, he missed his pill last night, and again at noon. And took his noon one at 4, telling me that he'd found an "extra" one. If he had taken all his pills, there wouldn't be an "extra" one. Think you're confused!? Try that every day. For two and a half years.

I emailed my brother in Sydney the other week with the subject heading: Operation Get Me Out of White Rock! I whined on and on about how I needed to get out of here for many reasons... and especially because dad needs more care and attention than I can give him. He emailed back and called it "Op GMOOWR"!

So, Op GMOOWR steps this week:
a) Painter lined up to come and take a look at dad's apartment walls, and determine which walls need to be painted... starting to get dad's place ready to sell.
b) Before the painter comes, I will need to wash all the baseboards, as they're really dusty and dirty.

Rain, Rain, Go Away

A word, about the weather. We live in a rainforest... we know it rains. However, this year has been the worst year in about 70 years for weather. First it was April; rain, fog, and some snow tossed in for good measure. Then it was May; ok, it's still raining. Then it was June; ok, sometimes we get a rainy June. Now we're into the third week of July, and the forecast is for nothing but rain. We're midway through summer, and it looks like it isn't going to come this year. The farmers are suffering as nothing grows without sunshine. The people are suffering... we've been stuck inside since September 2010.

I realize I am whining... but I love the heat! You might think that a pale-faced redhead would have the rain in my blood... my ancestors no doubt coming from Ireland or Scotland. However, they did end up in Australia... and I've inherited the intense desire to be warm, free of shivering.

I went to Sydney in November of last year to take a look around and see if it was feasible for dad and I to move back there. I left gorgeous sunshine and trees in bloom and came back to grey Vancouver, snow, not a stick of vegetation on the tree and about -3C. Which was an improvement I was told, over the -17C from the previous few days... was I ever glad being sick in Sydney had forced me to postpone my ticket for a few days.

No sooner had I arrived home, than my power went out. My suite is heated with electric heat, so when the power goes out in -3C weather, there is no way to keep it warm. I promptly burst into tears, and the first thought that went through my head was, "I'm in the wrong country!"

Following my trip to Sydney, I desperately wanted to move back. But how? The prospect seemed daunting, given all the restrictions with dad's medical care, not to mention my own issues. (Unemployment, no money... more on that later...)

I made the official decision on April 20th, as the freezing cold wind whipped around my head, and it was snowing downtown Vancouver. Decision confirmed July 14th, when it dumped rain all day, was cold and miserable and I realized we wouldn't be getting summer this year. And it would be another 10 month wait for spring again.

I Must Be Mad!

I must be mad! How many times a day do I second guess my decision?! That decision being: to move back to Sydney, Australia to be close to family support, warm weather and better job prospects. Uprooting dad and myself from everything we know here; doctor's, medical support, friends, familiarity... and travelling thousands of miles across an ocean to another country. Giving up friends, a roof over my head, a vehicle to transport me around, etc is big enough for me, let alone he who has special medical needs. For me it can be an adventure. For him, it seems mad!


To move dad into a care home is tough for a number of reasons - who wants their parent to go into a home, even if it is the best thing for them on a number of levels. I think my biggest fear is losing the family home. No matter where you go in life, you have the family home to fall back on should times be tough. When your dad moves into care, that lifelong security is gone. For a single woman, this is especially scary as now you really have to stand on your own. There's no fall back if you get sick, disabled, unemployed or any other crazy event life throws at you - and I know by now that life certainly likes it's twists and turns. So moving dad into a home has certainly taken a long time.

Angry

I'm really angry today for having 2.5 years of my life stolen from me. I'm really angry that I have to go back to the specialist this week for a follow up, and who knows what else. I'm really angry that it's just assumed that I'm the one to assume all of dads medical treatments. I'm really angry about the bondage I've been put into. I'm really angry that I have to see this through till the bitter end, that no one can get me out of this situation but me, and that the worst is yet to come.

I dont think dads nurse brought down his 8pm pill. He has a new nurse and I don't think she's been brought up to speed. I had a 10 minute argument with him when I was at a friend's house, trying to determine if she forgot or if he didn't know what was going on. So he's missed his 8pm pill I think. Im angry that I've been left to deal with the pills. I'm angry I have to start the day by calling him at 8am and invariably having an argument with him about taking the pills... always having to ask the question two or three ways to determine whether or not he has taken it, because he says yes, no, yes and I can't ever be sure. I'm angry I have to drop everything at 8pm to call him again to make him take his pill, and go through the argument again. At least there are nurses there at 12 and 4 to handle those pills. To which I'm still getting the question: 'When are we going to cut back on the nurses?'

So yes, I'm pretty angry. I'm trying to improve on that.

Dad By Numbers

The irony is not lost on me... the very bladder that keeps dad running to the toilet is the very bladder that has me grounded. I'm literally all packed and have no where to go. Waiting on results from dads urology appts, follow up to that, and then a biopsy on spots in the bladder wall. Could be nodules, diverticuli or cancer. But have to wait on who knows how long of waiting to get that resolved.
Last year hernia, this year bladder.
Dad by numbers:
Hernia: 2 dr visits, 1 er visit and 3 cancellations, 2 pre op appts and 1 surgery
Bladder: 1 dr visit, 2.5 urologist visits, 1 specialist urologist visit, 2 hospital procedures - so far
6 neurologist visits - North Surrey
Approximate 6 visits to Elder Health doctor - who monitors dads memory and cognition
2 visits to physio therapist at the hospital - in which dad accused her of trying to sell him a metronome for his walking.
2 - number of times Elder Health has assessed dad at home
1 home visit for swallow assessment
1 home visit for follow up to hospital overnight stay following 2009 fall
1 home visit by occupational therapist
4 ER visits - 2 for complications following Nov 2009 fall, 1 for hernia pain, 1 for August 2010 fall
GP visits - too numerous to count... approximate 8 - see below
Trips to Zellers pharmacy - once every 3 weeks for pill prescriptions. Pills can be filled 3 times before you have to go back to the doctor for a refill.
6 - number of days the Nurse Next Door visits - once on Monday and twice the rest of the time
2 - number of times a day dad complains about Nurse Next Door coming in - when does it end?!

Soup for a Brain

June 23rd – My brain is like soup... everything floating around and nothing is coming together.

Reverse Responsibility

Parents spend their time when you're growing up teaching you about responsibility: personal responsibility, financial responsibility. How is it that so many then, are completely unprepared for their old age. It shouldn't come as a surprise - if you don't die, then you're going to get old. With age comes health issues etc. How many times have i read the sentence: taking care of aging parents. They call it the sandwich generation - the generation looking after children and aging parents.

My father was diagnosed with Parkinson's - not a disease that is going to improve over time. The same father who made sure we always had ID on us and who had to know where we were at all times in case of emergency. That very father had no plans for his Parkinson's diagnose. Unless you call a head in the sand a plan.

This is not an isolated issue. So many children are struggling to look after their parents. This involves a myriad of issues: dr appt, meals, personal care, etc. It can be a full time job. But what of the children's own full time job? They too need to make the most of their working years so they can afford their own retirement. It's not a matter of shirking their duties - but parents are a full time job in their old age. It's their responsiblity to plan for it ahead of time... not leaving a massive, emotional job for their children to take care of it because it's their duty.

After mom died, dad couldn't make decisions on his own. Well, he couldn't make them before that either, but she was able to make them on his behalf. Afterwards, he was alone... his disease had progressed too far. His future care should really have been discussed at time of diagnose or shortly thereafter, instead of sweeping the bomb under the mat and waiting for it it explode.

What Can I Do To Help?

How many times had I uttered that question? You know someone is in need, but feel helpless to do anything. When youre on the receiving end of the question, sometimes it's all you can do just to bite your tongue and smile. What else can you say... actually, can you please liase with my dads doctors, coordinate visits, take time off work and take him to the appointment. That would be really helpful. Or could you please call him 4x a day to remind him to take his pill, remindin him each time why he needs to take his pills. It can get really annoying to watch the clock and drop everything to make that call at 8, 12, 4 and 8.

So there are something's you just can't call and ask someone else to do. Next time you feel like uttering the question ... stop yourself ... and think before speaking. Helping someone out doesn't need to be that obvious. Slip someone a gift card to a bookstore, a coffee shop, a spa. Treat them to something they wouldn't necessarily do for themselves. I remember receiving a gift card to a spa. The gesture alone made me cry. To me it meant that someone saw my struggle and wanted to give me a lift. Someone else gave me a coffee gift card. Which meant that a few times I was out running dad errands, I got to treat myself to a drink.

People will not tell you what they need you to do. At least not my type! We just need to open our eyes to see another's need. I speak for myself as well. Flowers delivered, dinner delivered - even if it is just pizza, a homemade loaf, errands run, pile of magazines. All it takes is for someone to feel special - and that alone can lift the burden.

Jan 2011- The Sign

I had not expected the sign to come by way of a Port-a-Potty. But there it was. It's uninspired bright blue box marring the sightline of a former view of trees. For a visual person, the blue box and the adjacent orange construction fence is the equivalent of stabbing the knife in and turning it.

There was a wooded lot kitty corner to my second floor suite. I loved looking out over the trees... watching for their neon growth in the spring, listened to the birds in the branches in the summer, watched the leaves fall slowly off in the autumn, and watch the bare trunks sway in the winter wind.

The developers moved in the second week of January and mowed the whole forest down. The metal teeth of the excavator chomping into my thoughts until all I felt like doing was screaming.

I could barely look out over the aftermath. The ripped up soil, the trees lying on their sides; roots exposed for all to see. I looked out over the open wound of upheaved dirt and slashed wood and wondered: how am I going to put my life back together?