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Fi mum23

Royalty, Wife, Mummy, friend, teacher, student & fitness blogger

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Parkinson’s disease

Let the heart break..

Yes, it’s been quite some time since blogging.  :0(  So much has been going on.. we have started back at school, moved house, started soccer season etc etc.. and been busier than we’ve probably ever been.   The stress levels have been high and it’s not too fun right now.  (that’s putting it super mildly).

My awesome Dad, who I’ve mentioned before as being in end stage Parkinson’s disease, went into permanent care on January 6.  The reason for him going into permanent care was actually more about my Mum, his primary caregiver, than it was about him.  My Mum basically had a breakdown after the stress of years and years of struggle got on top of her.  We simply had to put Dad into, what began as, 2wks respite.  My dear ole Dad was happy to go into respite that day, going in very accepting of the situation, knowing that Mum needed a well earned rest.  He liked it so much that within a few days, he voiced himself that he would stay on permanently there.

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This in itself was a HUGE answer to prayer as none of us EVER wanted to ‘put him in a home’ against his will… or even with him begrudgingly going in. For him to make the decision himself, and be in good, sound mind when making it, was AWESOME !!!

Regular visits to Dad began, trips out in the leafy streets in his wheelchair, a trip back to our place for a family dinner….  Mum was steadily improving with the full nights of sleep she was able to now get with Dad being cared for elsewhere…. Things seemed to be going along swimmingly…  until things, well, weren’t ….  we got that first call that Dad had had a fall and was going in an ambulance to hospital…  a few hours of waiting and getting him discharged and back to the home.  This happened the following week too and once again, a lot of stress for poor Dad before returning to the home and being tucked up securely in bed.  During this time Dad had also started having bad hallucinations which were very upsetting for him.. and us as well.

From that point on, Dad seemed to go downhill fast.  To the point now where he spends most of his time in a fall-out chair, can no longer weight bear, speak legibly, take in liquid or food without choking, or get to the toilet himself.  Even as I type this, I’m once again blown away by how life has changed for Dad and for us in these 3 months.  It’s very hard to even grasp that it has been ONLY 3 months.  Dad often doesn’t recognise us, or have the energy to show any emotion.  To say that this time has been and is hard, is an absolute understatement.    What has been beyond torturous is when Dad is sad, and sometimes inconsolably upset.   He’s over it.. and you can’t blame him.  It really is the most heartbreaking though at these points as there is little we can do but pray over him, hold his hand and basically beg  The Lord to take him home.

Dad has battled with this disease for more than 25yrs… we’ve watched him go from an active, skilled man who was our absolute first port of call for advise on nearly anything, to a shadow of his former self.  He has lost so much weight in these 3mths that I can’t even bear to look under his shirt.  Many visits are spent in tears and anguish.  The fun times are still there though.. we talk about fond family memories and get a smile or a laugh out of him.

Dad still remains to be an amazing testimony to those around him.  He isn’t able to read his bible anymore, so we do that for him, as well as play his favourite hymns and worship songs.  The nurses who care for Dad are simply amazing, with hearts of gold.  God sure knew what He was doing when he lead us to this particular home.  You hear so many awful stories, and we did in fact have one bad experience with an agency nurse, but that one time has been our only complaint.   They all love Dad to pieces and he  is comfortable with them.  Who knows what a witness he’s being to others in the home, both staff and residents.. and maybe even residents visitors too.

I cannot even explain how much my heart is breaking living through this situation. Of course we’ve always known this time would come, but it’s so true what they all say… You can know it’s coming, but never be fully prepared for it’s emotional onslaught.  I want my Dad back !! I want to talk to him and have him talk back !!  I want my kids to know their Poppy as the man I grew up with… a hilarious jokester, a wealth of knowledge, and the greatest supporter anyone could EVER ask for.

Even though I rest in the full and unquestioning knowledge that Dad will soon be in Glory, and free of his pain, discomfort and undignified reality, the selfish part of me just wants to keep him with me.  This is what I wrestle with… the selfish part of me.  I do know, however, that I WILL have nothing but JOY in my heart when he goes home and I imagine what he is seeing & experiencing right at that time.  My heart will break into a million pieces, with some of those fragments to never repair this side of eternity, but I will live my life remembering how blessed I was to have him, and look forward to meeting him again.

I know that I have been blessed beyond measure having my Dad as my Dad !!!  He’s never disappointed me, he’s never let me down, he’s ALWAYS had my back.. and I will ALWAYS be grateful for this. and so much more !!!!!

I’ll treasure these last moments together and ride thru the pain, knowing that what is so so painful now will turn out to be some of the most precious times I ever had with my Dad.

Love you Dad !!!!!  xox

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Dad’s surgery update !!

I’m late in writing this blog, but as they say.. better late than never !

The last 2wks have been CRAZY !!  Busy, stressful, exhausting, revealing, frustrating, hurtful, mind blowing, fun, sad, & lots more !!  Sounds like a whirlwind right ?  Well, it was !!

Firstly, let’s go on from my last entry which was the debacle that was Dad’s initial surgery date of Tuesday 25th March.  Let’s not re-hash as it makes me too sad/mad.  Unfortunately though, things didn’t improve.  Dad went back to transition care at Brighton in a deteriorated state… even the nurses commented on it.

We received the call that Dad’s rescheduled surgery was to be the following Thursday (3rd April).  Mum, Karen & I all planned to make lots of phone calls prior to this new surgery time as there was NO WAY we were sending Dad back to PA unless someone CONFIRMED that the batteries were on site.  We didn’t actually end up getting that confirmation, but the surgery did in fact go ahead.  Dad now does have new ‘breast implants’.  (LOL).  However, following the surgery, Mum & I headed home after making sure Dad was settled into the ward.  Maybe we should have stayed a little longer to counteract the now known habit of PA hospital stuffing up !  :0(  Dad received no dinner until he asked someone at 7.30 and they eventually rustled him up a sandwich.  If that wasn’t bad enough… the following morning I spoke to Dad at 8.30am and once again, he’d received no breakfast, or, & more importantly, NO MEDICATION !!  The poor bloke can’t catch a break !!  When I blew them a new earhole over the incident, they said they were using a new meals system and some people were being missed… well, that makes sense once (dinner), but when he’s been missed once.. you’d think they’d make sure it doesn’t happen again.

Mum & I were in there by 10.30am.  Thank you to my gorgeous niece Claudia who sat with my children for their final day of term one (more of that in a separate post).

Thanks The Lord, Dad was in quite good spirits, but did say he’d had a very bad night.  (There could be another blog there, but I’m not sure yet.. Ahh, the intrigue. LOL)  Mum & I were determined to stay with Dad until he was transported back to Transition Care, as we didn’t want him in that hospital a moment longer.  Funnily enough… when I was on hold with the PA when ringing Dad in the morning, the hold music/message told me that the PA hospital has recently received an award for outstanding patient care.. What the ???  I don’t think so.  However, this did lead me to think… wait a second.. what can we learn from this.  They would have only received the award if there was plenty of proof to warrant it, so maybe.. just maybe, The Lord had something in there to teach us…. if only to never go to PA again???  Bahahahaha.  Kidding.  Unfortunately we’re stuck with them as Dad has to continue seeing the neurologist there.

As it stands now.. Dad has an appointment on Tuesday @ 7.30am to switch the batteries ON !!!  Now, this could be a HUGE amazing exciting moment.. or it could be a huge anti-climax.. we simply won’t know until it happens.  I’m praying that Dad at the very least will receive some more mobility and decrease in discomfort once the batteries are switched on.

It’s beyond comforting to know that it is all in God’s hands.  When things seem to be going to garbage and back, it’s so important to know that all things are under His control.  Not always an easy thing to latch onto… especially in the thick of it…  but important none the less.

Trust in the Lord with all your heart,
and do not lean on your own understanding.
In all your ways acknowledge him,
and he will make straight your paths.  Proberbs 3:5 & 6

This was SUCH a help….  mostly the part about ‘do not lean on your own understanding’….  the entire thing just seemed so unfair, so WRONG !!!!

It was hard to not focus on this one though at the time you are dealing with a crying broken Dad who just want to go Home ! 

“Sit at my right hand, until I make your enemies your footstool.” Psalm 110:1

There was definitely some warfare prayers going on during this time too !!  I spent the time of Dad’s surgery and time at the PA claiming protection over him.  Claiming and constantly thanking The Lord for the additional ministering and warrior angels around him at those times.  I wasn’t going to let the enemy get any footholds during Dad’s moments of vulnerability.

What IS comforting is that Dad is now back at Brighton happy as Larry and enjoying his Moreton bay view.

Blessings Peeps !!! xox

 

 

HS Day 41 Part 2 – I don’t wanna write part 2 tho :0(

Hi all.  This is part 2 of what happened on Tuesday…  what was supposed to be Dad’s surgery day !!  His long awaited, much fought for surgery !

Anyway.. in the pics shown in part 1, we were under the impression that if Dad wasn’t already in surgery, he was very close to going in… turns out he wasn’t in at all.. he was upstairs in pre-op having a very bad panic attack!

As soon as we found this out, we rushed back up.. Mum, the 3 kids and I.  While I set the kids up with iPads in the waiting room, which Thank The Lord was right outside where Dad was…  Mum went in to find Dad extremely upset.. in tears.. miserable.  This was at about 3pm ish.  His surgery was supposed to be at 1pm.. he’d been fasted since midnight, which really means dinner the night before.  Poor fella was starving !!

Finally at 4.30, we were told that not only was the surgery cancelled, but the battery replacements that were to be fitted were still in SYDNEY !!  Let’s just say, we were a bit P-I-S-E-D  (joke from Rome & Michelle’s high school reunion movie).  I mean seriously, if the batteries were still in Sydney, they would have known that before he’d even been transported by taxi from transition care that morning.  Putting aside how damaging emotionally this ordeal was for Dad… what about the huge waste of tax payer money etc etc.

Then, can you believe it, it actually got worse when they had no bed for Dad anywhere.  We were so mad with PA hospital by the point, but I do have to say that the nursing staff and community health nurse were more than helpful…  they were also very angry about Dad’s treatment and really bent over backwards to fix this as best they could.

I had to leave at 6ish to get my kids home…  walking to the train station before it was dark.  At this point, we had literally no idea when a bed would be found and Mum could go home, so I thought I needed to get the kids home, who by that point had been there for 8.5hrs.  We got home at about a quarter past 7 and by that time, a bed had been miraculously found for Dad at the PA.

He has now this morning returned to transition care until his re-booked surgery next Thursday.  We’ll definitely be putting some phone calls in that morning though before transporting him over again.. making sure the batteries are actually in the state.

We have since found out that Dad’s neurosurgeon, Dr Sarah Olsen, has resigned a few weeks back because of patients being treated exactly as Dad was on Tuesday…like an unimportant number.. not a person.

OK.. rant over.. now to be positive and put my focus back on GOD’S plans for Dad.. which let’s face it, is what I should have done all along.

I’m going to share my download from Tuesday nights journaling. My question to God … Why did this happen today ?? First response… I’m not allowed to ask ‘why?’. Lol. He always pulls me up on that one.
Anyway moving on… Here’s what I got..

“I am carrying Ken ! I surround him. He is protected, he is loved. He is my son. I love him & he loves Me. I am his resting place, his fortress, his ever present strength in times of trouble. Have faith in ME, not in man, and the works of man. My love is constant, unrelenting, loud & heavy.

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Not hard to see how I felt so much better after this journalling, plus the praise & worship time I had on Tuesday night.

God is GOOD !!!

 

HS Day 40 – Filing, filing & more filing !!

WOW !! The amount of paperwork involved in Homeschooling is amazing !!  The file system I started with is going to have to be revised.  Also, the children often need their completed books if they’ve had concept descriptions or diagrams in them etc.  So, I’ll need to find a file drawer/system for them to have on their desk.  Seems easy right? Not so much. All desk file systems have 5 slots.. and I need 6… for 6 subjects.  So frustrating.. and yes, such a first world problem I know. LOL.  

What a busy full-on weekend we had !!  With the boys at Cadet Camp, Jaz & I were able to go to the shops and have a nice girly time with some retail therapy followed by milkshakes and cake at Coffee Club.  Yesturday morning we went to the movies and saw ‘Mr Peabody & Sherman’.  Great movie !!!  After rushing back home for our lunch visitors, we then had to hang out for Terry to get home from camp, as I’m too chicken to use the BBQ myself after the last ‘incident’.  whoops.  

Our lunch visitors were two or my most favourite families !!!  It was such a HUGE blessing to me to have these two women come into my life years ago.  They are like minded Godly women that speak into my life often.  They help me along my walk with The Lord when I have blisters and can hardly walk….  they encourage me when I’m unsure of something… and basically, I just know they’re always THERE !! Blessed much peeps !!  Love you two Alison & Janelle !! 

My full weekend was topped off with a GC board meeting with 5 of my fav people.  No matter how tired you are… it’s fun being with these great people.  It’s always a huge blessing to be surrounded by like minded people who have a heart for being bright lights in the darkness for our GEMS & Cadets.  We have our national leaders conference coming up in only 11wks, so that is exciting !!  It’s in Hobart, Tasmania too, so that makes it even more exciting.  I LOVE Tassie !!!  

My Dad is having his very much long awaited surgery t’row !!  It’s battery replacement for his brain stimulators.  So, the kids & I will gather all of our books up and head to hospital with Mum in the morning to most likely spend the morning, if not the day, there…..  to be there when he goes in, and also when he wakes up.  There would be nothing worse than heading in for an operation, or coming out of one, without a familiar face there.  

Visiting Poppy today was fun for the kids, as they got to go to the beachfront and have a swim.  Not so appealing to many.. but they thought it was fab.  Dad really has been blessed to be in such a beautiful place for his transition care.  Ocean (technically Bay) views out his HUGE windows, great size room, great atmosphere… plus my sister works there, so he had great visits with her on all work days.  

We have now found out he is first up on the afternoon surgery list, so we’ll head there late morning to see him before he goes in.  Hoping to get all schoolwork done before leaving, but if not…  Hospital schooling it’ll be for t’row.  :0)  Heading to bed now after yet another full on day..  Just got back from coffee with the girls after being at Physie with Jaz.  Gotta love Mondays !!  LOL  

Blessings Peeps !  xox

 

HS Day 23 – Schoolwork, Birthdays, Chinese food.. and a broken neck !

Well, here we are amidst day 24 actually … But I basically haven’t been asleep for any decent length of time since yesterday morning, so it’s kinda still the same day .
The kids had a great work day yest. It was Terry’s birthday, so we had his birthday dinner to look forward to.
In the afternoon, we went to the optometrist to choose frames for new reading glasses with Nanna & Poppy.
Dinner was at a great Chinese restaurant we hadn’t been to before. There were 19 of us.. A great crowd ! My Dad (poppy) was acting rather strange while out to dinner .. To fill in some blanks.. My Dad is in late stage Parkinson’s disease… Anyway.. He basically fell out of his wheelchair more than a few times while at the restaurant, and then had a fall when getting out of the car at home.
My Mum called an ambulance when Dad seemed to be increasingly confused, weak, in pain.. And generally not right.
He has been a little ‘off’ for a few days and we had wondered if he might have an infection brewing as he was displaying very similar behaviors to last time he was hospitalized with a UTI.
My niece Caitlin & I went in the ambulance with Dad. When Dad mentioned he had a sore neck, they organised an X-ray & CT scan.
At 2am, we thought he was heading to the ward, so called Terry to come collect us, but soon after that, they got the results of the CT and informed us that he has a C2 Fracture. For those of you who don’t know, C2 is a vertebrae quite high up in the neck .
They let us (& sleepy Dad) know that he would need to go onto his back and have a neck brace fitted. This was going to prove difficult as Dad is already quite angled to one side due to the Parkinson’s . They modified a collar to fit him temporarily.. And a custom one will be made today.

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We were finally heading home at 4am as he was soon heading upstairs to the ward.
I’ve had about 3hrs sleep so far. Now I sit in the schoolroom feeling disgustingly sick I’m so tired.
What keeps me going …

The steadfast love of the Lord never ceases;
his mercies never come to an end; they are new every morning;
great is your faithfulness.
Lamentations 3:22

&

You can go to bed without fear; you will lie down and sleep soundly. (Proverbs 3:24 NLT)

As well as loads more fantastic scripture !!

So, here’s to some sound sleep heading my way!
Blessings peeps !!!
xox

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