Slightly Settled

(Tuesday, August 30/11)

What a difference a night's sleep makes! The night before, I didn't get to sleep till after 1.30 am, was woken by a nightmare a couple of hours later (one of those nightmares where you can't talk, can't move), and then by construction noise at 6.30 in the morning! I got up feeling pretty wrecked, and then went through the whole thing with dad, as described yesterday.


Today, I feel rested, and have had a chance to think. Dad says he's feeling panicked about the move, as am I. There's still so much to do, plus there's a big holiday Monday coming up that pushes things back a bit. I think the best compromise is to move the date back by one week. I can't risk leaving dad on his own any longer... I would hate for him to have a major fall that he might not return home from, and then we'd never get to move. As it is, I'm sitting on pins and needles, and will be until we're in the air!

(Later on in the day...)

Lives changed forever at 2.50pm when I booked our one way tickets to Sydney. Yes. Booked. All that thought, analyzing, planning... sorted in one short phone call to Air Canada. An aisle seat and a middle seat, not too far from the loo, handicap accessibility requested for planing and deplaning. We're all set!

I got off the phone and promptly started bawling. What is wrong with me? I guess all that emotion has to go somewhere.

Of course I still wasn't settled after making the decision and confirming it. Oh no. Now I was guessing myself for the millionth time. Finally, I said to myself... it's the right decision. It's done. At the end of the day, you want dad in a care home where he can sit and listen to the birdsong in the trees, and feel warmth. (He certainly isn't getting that here.) Then I remembered him coming and asking for help to button up his shirt this afternoon, and know that it's time. It's time for more care than I can now give him.

And the tears flow again.

It's been like this all afternoon. Even thoughts of saying good bye to friends. Or hello to more friends. It sets me off again; standing at the kitchen sink, bawling.

In the words of my brother when I told him what was going on - "Yer weird." (Nothing like a little brotherly love to set you straight again!)

Going Around in Circles

Was feeling pretty dejected yesterday. Talked to dad about moving in the afternoon, and he seemed warmed up to the idea. Went over there to go over the tickets with him.

No.

Oh, not this again!

No tickets. Too soon. Feeling panicked. And on it went.

Again, it's so hard to put head down and focus and trust that I've made the right decision, when he's there asking the same questions I asked myself months ago, and settled.
Dad, it's time. We've been waiting on doctors for so long. We have a window of opportunity to move, get you set up in care, and move on to the next level of medical attention that you need.

Hrumpf.

Now, dad has asked me to look out for his best interests. We have legal paperwork and all. However, when it comes to family, you always resort back to your original role. Father. Daughter. Provider. Recipient. How do you reverse that role? With great difficulty, if not impossible. Dad always made the decisions for our family. Now that he's in the position of recipient of the decision, he's making it entirely impossible. Everything is questioned, every decision is fought against. It feels like twice the battle. I always feel like I'm getting my own way - which was always the battle cry when I was younger. 'Donna is getting her own way again.' as my friend pointed out... I'm getting done what needs to be done. If I wanted my own way, I'd be on a little South Pacific tour on his dime. (Sounds good to me. It's still an option...)

I should be sensitive to his needs and concerns, and that he'll be soon saying a lot of goodbyes. I'm just dealing with my own concerns; leaving all that I know behind for the promise of the unknown. Seems a bit ridiculous. My brain has fired off into 50 different directions ... him adding worries at the last minute is overload. Then again, I'm just remembering, that's what men do!! (Ah - the beauty of writing - revelation!) Women think things out ahead of time .... ie camping. Lists are written, shopping done, items packed. Man comes along at last minute... oh duh, the oil needs changing... I'll do that right now. Woman comes out of house, bags packed, everything ready to go... only to find the car ripped apart, mid-repair. Here she'd envisioned an early start, stopping for a relaxing coffee along the way. Now it's another hour or two wait while he gets it together. Ah.

So I've got this all organized in my head, on pieces of paper, movers, auctions all lined up to take care of everything. Dad comes in at the end and decides that maybe he should get involved. But I was organized! I had it taken care of. Now you've got me second guessing myself. This is benefitting no one.

Friday, August 26

I thought this was going to be a story of me taking my dad home... now I don't know what kind of story it is.

2.30 pm - I brought up the move to Sydney conversation again; as in, this time, let's get serious if we're going to do this. Serious as in, time to book tickets. We've talked about it in the past. Continuously, actually. Have been through the pros and cons, left, right and center! On one trip back from the doctor, I said to dad that if the results came back clear, that I would start organizing the necessary things to do, and we could move. He would be able to see his sisters and brother again, as well as numerous nieces, nephews, great nieces and nephews, old friends. He could sit outside and listen to the birds sing; one of his simple pleasures. I asked him how that sounded and he said it sounded good.

I thought we were on the same wavelength. As my mom used to say, "You know what thought did..."

Well! When I brought up the subject of purchasing tickets, he didn't go over very well. In fact, it went over like a lead shot! HRUMPF!

'Dad, I'm going to book tickets to Australia on Monday.'
'No. '
'Sorry?'
'No.'
'Do you want to sit here in the rain for the next 6 months?'
'It's too hot in Australia.'

The conversation fell apart from there. Finally, I said, 'I'm going to Australia at the end of September. You can come or you can stay. I'm happy to help you move if you want. Otherwise I'm putting you into the care of the ministry here and you can pay $170/hr power of attorney fees.'
'Sounds like that's an ultimatum.'
'Yep. I guess it is. You have the weekend to think about it. I'm booking tickets on Monday.'
'Hrumpf.' (I just knew he was thinking, Donna is getting her own way again.)

6.30 pm - More thinking on my part.... maybe this is a stupid plan. Who drags a 70 year old man, battling Parkinson's dieease 10,000 km across the Pacific Ocean; away from his medical support team, a roof over his head, and all that he's known for the past 32 years. Am I stark, raving mad. Another part of me has to talk myself down, AGAIN! Donna! You have been over this and over this until you've worn a hole right through! This is the best option. Dad has to go into care; do you want it to be here or Australia? You need a new job; do you want to do that here or Australia? You need a new car; do you want one here or Australia? You need a new place to live; do you want to do that here or in Australia? Do you wan to live out the next ten months here in the rain, or do you want to enjoy the sunshine in Australia? Do you want to continue to battle it alone; or do you want to be close to friends and family in Australia? I thought so. Stick to the plan, it's a good plan. It IS overwhelming, but take it one step at a time. You will get there.

8 pm - Time to call dad for his 8pm pill. Ask him what his fears are about moving back to Australia, since that's what he's wanted to do for a long time. He's worried that he's going to be stranded. Ok, that's a valid fear. That's (one of) my fear(s) as well! I also fear being stuck here in a rut. I reassure him that I've thought this through, front back and sideways. (Front back and sideways, front back and sideways and repeat!) I reassure him that I've not left him stranded yet, and I'm not about to start now. We leave it for the day; tomorrow is a new day.

Evening Pill Routine

(A sample of pretty much every evening.)

Since dad's Sinemet pill times are 8am, 12pm, 4pm and 8pm... I call him at 8am for those pills, then the nurses are there over the 12pm and 4pm pill times, then I call at 8pm for that pill and to say good night. The nurses bring the 8pm pill down, and place it beside the clock radio in the kitchen, next to the sink. I tuck the 8am pills in the corner of the bottom shelf of the overhead cupboard, so that when I call him in the am, he'll take those pills. One would think that the pills in their places would register in his mind as a routine. One would think.

The past few nights have gone something like this:

8pm ring ring

"Hello?"
"Hi dad, it's time for your 8pm pill."
"Is it?"
"Yes. Where are you?"
"I'm in bed. I guess I'll have to go get it then."
Sounds of him walking to the kitchen for the pill.
"Dad... the pill is in the purple container next to the clock radio, do you see it?"
"I don't see it."
"Purple container, glass dish, next to clock radio?"
"Oh..."
Sounds of the phone being set down. THEN... sounds of a glass bowl being dragged across a cabinet. The 8 AM pills!!
"DAD!"
No answer
"DAAAD!"
Still no answer.
"DAAAAAAD DAAAAAAAAAAAAAD DAAAAAAAAAAAAAAD!!!" I'm screaming into the phone so he'll pick up.
"What?"
"Which pills do you have?"
"It's a white container with two pills in it."
"Did you take it from the cabinet?"
"Yes."
"Those are your pills for tomorrow. Were you not listening to me? The purple container on the counter is the pill for now.. the one that says 8 pm? The one you take every night?"
"Oh." Silence.
"Please put those pills away. Those are your pills for tomorrow morning. Please take the pill on the counter."
Silence.
I'm panicking again! "What are you doing dad?"
"Putting the 8am pills away."
Sound of water running.
"Do you have the pill in the purple container?"
More silence, then, "Well, that's down the hatch. I guess that's it then."
"I guess. Ok. Good night, have a good sleep."
"Same to you." Click.

8.11pm - phone call ends.

Nurse Next Door

COMING SOON!

Medical System Cont'd

Part 2 of 2

December 3, 2009 - Dad was still having hallucinations, pain, etc. I spoke wtih a nurse at Fraser Health about this as she asked about his fall, etc. when they called for a follow up. She told me she was going to speak with another nurse, and had the nurse call me. The nurse told me that I would have to take dad back to emergency, that something was not right and they would have to run more tests. I was fully prepared for them to come back and say that he had a stroke, or that he had dementia, or something mad like that.

When we were finally admitted into a bed in the emergency room, they had patients lining the hallways. A heart patient from St. Paul's arrived, and they didn't have a bed for her, and couldn't get her hooked up to the heart machine as soon as possible as it was already in use. When they brought her in, the toe of her guerney was lined up with the foot of with dad's bed - no privacy in the hospital - and she started to throw up. Dad was about to lose it, so I quickly jumped up and pulled the curtain.

I spent that afternoon/evening at the hospital with dad. They kept him in overnight, and were going to do a CT scan in the morning. By noon the next day, I hadn't heard from them, and started to worry that the length of time it's taking means it's bad news. Then again, it is the hospital, and everything happens in slow mottion. They finally called, said they were backlogged, and were going to monitor dad's situation.

I went in in the afternoon to see him, and he had been moved to a bed in the emergency room hallway. Again, there was no privacy. Another older gentleman was in an "isolation room" about seven feet away from dad. Nurses were suiting up in full disposable scrubs and face masks to deal with the man, not creating a whole lot of confidence in us.

The doctor came a while later to assess dad to see if he could go home. Asking dad some questions, I noticed that dad was very confused. In turn, I was confused as he seemed to be progressively getting worse after being admitted to the hospital rather than improving. A little research at the nurses station revealed that they had been giving him Tylenol 3 for his pain, despite my instruction to the contrary. With Parkinson's medication, we have found that he cannot take anything stronger than regular Tylenol or iburphen to manage the pain. Antibiotics are out, as are most other medications that interfere and cause confusion and hallucinations. I informed them of this, and asked them to please stop giving him the Tylenol 3. I also had to be on top of them about administering the Sinemet for the Parkinson's, as that has also been missed. Poor dad, he wasn't getting his Parkinson's medication on time, as well as being administered Tylenol 3 which was causing him confusion.

The doctor wanted him to stay in one more night for observation. I left him there on the bed in the hallway that night with a heavy heart. Overnight, I became very frustrated with the whole situation; the mix up of pills, dad sleeping in a brightly lit corridor in a narrow bed that he couldn't turn around in due to his physical limiations. I went marching into that emergency room the following morning, determined to have him released into my care. As I entered the sliding ER doors, I realized dad's bed had been facing the action all night long. There he was, sitting on the edge of the bed, forlorn. Fortuneately, he was dressed and ready to be released... so I didn't have to put up a fight. I got him out of there as soon as I could.

As I was whisking him out the door, the Elder Health doctor on duty caught up with me. Discussing the pill mix up, confusion, etc. she commented that with young children and the elderly, it's a tough balance to get the medication balance correct. To avoid all prescription meds, if possible. To which I wholeheartedly agreed. I was learning something in all of this!

Prologue... We managed dad's pain with doses every four hours of regular Tylenol. It built up a "cushion" for him, and got him through the next few weeks of recovering from a cracked L1 vertebra.

It was around about this time that I retained the services of the Nurse Next Door...

To be continued...

Medical System

Part 1 of 2

The outgoing president of the Canadian Medical Association, Dr. Jeffrey Turnbull, voiced his concern this week over the Canadian health system.

A few items from the article from the Vancouver Sun, Tuesday August 23, stood out to me...

Turnbull, 60, said that, in his hospital alone, 580 operations were cancelled last year and that patients wait in emergency rooms for days for a bed, "or even just a chance to receive care in a hallway."

Turnbull said the system is failing to put the needs of patients first, especially the most vulnerable, including the young, the elderly, the homeless, the addicted, aboriginal peoples . . . "and, most fundamentally, the poor."

Earlier doctors spoke of front-line frustrations, of long delays for care and referrals, of having to chase down paper and charts and being blamed for problems that are systemwide.

It was reassuring to me to read this from a top doctor, as these have been my observations in dealing with the health care system over the past 2 1/2 years.

Take for example, our dealings with the hospital in November 2009. On a cold, wet Sunday afternoon (November 15), I had driven up to the front door of dad's apartment building to drop him off. For some asinine reason, there is no handicap accessibilty at the front door of the apartment building (built in 2004), just a high curb. There was little space for dad to manouver between the car door and the curb. He got twisted up in his feet and over he went. One minute he was there, the next he disappeared. I panicked... but at least my brain was still working! I remembered to turn off the car, and pull on the e-brake. As the car was parked on an incline, the last thing I wanted was a dad-pancake. A man overboard was bad enough.

Rushing around to the other side of the car, I found dad on his side in the gutter. He had landed on his elbow, and scratched it up. I did the number one no-no of first aid, and moved him up to his apartment. In my defence, it was November and he was lying in a dirty gutter. I did check to see if he could move his limbs.

I called the ambulance to take him to the hospital. The paramedics came to check him out, and didn't think anything was broken. Recommended he sit tight for a couple of days, and go to the doctor if he was still in pain. At that point in time, the H1N1 virus was of great concern. They didn't want him to risk coming into contact with it at the hospital if he didn't need to.

A couple of days later, dad was still in pain. I wasn't able to take him to the doctor at the walk in clinic until Thursday. Dad was prescribed pain medication, and ibuprophen. I told the doctor he reacts to some medications, so she gave us a 4 pill sample of the pain medication to see how it would go. We then went to the hospital in order for his lower back and hip to be x-rayed, as that is where he was having the pain.

Dad was meant to take the pain medication 1 every 24 hours. I saw him on the Friday following the fall and he seemed ok. I talked to him on the Saturday and he seemed confused about when he was meant to be taking the pills. I stopped in to see him at 5 pm, and realized he hadn't taken his 4pm Parkinson’s medication. It’s so important that he take it right on time. Dad told me that it didn't make sense, he couldn't figure it out. He seemed confused, so I knew something was really wrong with him.

I called the nurse phone line then and they told me to take him to emergency to have him checked out. We waited for an hour (Fortunately it was only that long, the sign did say there was a 2-4 hour wait.), and then went in to a bed, where he was checked out. I told the doctor about finding the pain medication, and that a pill was missing. He should have taken 2 and there should be 2 left. There was only one pill left. Dad had taken another pain pill within the 24 hours, but I couldn’t confirm when. The doctor took a look at the bottle... Tramadol. He told us he hates Tramadol. It’s a narcotic. That he's seen the confusion etc. before in patients with underlying neurological issues.

The doctor also had a chance there to review the x-rays from Thursday night. He confirmed that dad had cracked his L1 vertebrae when he fell. There’s nothing they can do for it, other than to let it heal. His was compressed it by about ¼ of an inch. (Apparently in the US, they can inject a sort of cement into the area to aid in the healing and compression... but it’s not available in Canada.) He gave us a prescription for a nasal spray for the pain. I asked about dad staying in overnight for observation. He said that with conditions like dad’s, they don’t get much sleep in hospital, and it can be detrimental to their getting well. As well as it being an unfamiliar location.

I took dad home... by then it was 8pm. I gave him some food, water, pills and sent him to bed.

Cont'd...