I'll Start At The Very Beginning
My husband Dale, lived the life he wanted to live. I don't believe there was much, that he had dreamed of, that he didn't achieve
I always felt, that if he was a cat, he had almost, used up all of his 9 lives
He loved adventures
On the sea, on land, always over the top
Life was never boring living with him
At times, fairly stressful for me, as a partner
But I wouldn't have missed any of it
Unfortunately for him, his life ended with one of the most cruel conditions
PSP Progressive Supra Nuclear Palsy
This condition is rare. They are still working out the best way to treat it. Currently there is no cure.
I would like to share our journey as Dale slipped away from us
Dales passions were,
His family,
Dudley also a sufferer of PSP, died in 2002 aged 67
"It’s been almost 2 years since Dale had receive an actual diagnosis of some from of dementia
It was obvious to the family, that there was something radically wrong
It really all came to a head in 2011
We had been noticing, previous to that, changes in Dale.
At first we thought he was depressed. He lay around a lot, did nothing, really only happy on the boat, where he lay around and did nothing, but on the boat...in a lovely bay soaking up the gamma rays
He totally lost interest in many things
He had become something that would have appalled him
“Boring”
All our married life we have been best friends and could spend days together, happy in our own company His lethargy was making this more difficult;t
Years ago while we were traveling, I watched old people dining, never saying a word to each other
I never wanted to be that couple but all of a sudden…we were that couple
Of course to cover it up, I burbled on about nothing in particular.
Needing a few wines, to make the occasion not so tedious
Inviting other people to join us. I was dominating the conversation (mind you I was quite good at that) but Dale hardly said boo
I was getting considerably more nervous going out on the boat
He seemed to make more mistakes than normal
One crash into a marina, which could have been avoided, even though we got caught by a gust
He gunned it and we crashed into poles, luckily not much damage
But it was really scary
I was always so trusting in his boatmanship. He was a legend
I kept on making excuses not to go sailing, or making sure we had other people with is.
That was fine, someone to help"
So way back to January 2011
We had our normal holiday up north in Whangaroa...
Normally his balance was great and he was very nimble
This time he missed and ended up in the water and injured his hand and foot
We finally got the boat tied up, into the car and back home
Ready to fly out to Sydney
We had to take Dale to a medical centre there and he ended up with a walking stick
and a splint on his hand
And looking like "so stylish" with his foot in a Jandal
Really smooth
tagging along
Didn't appear to be any concussion, so we carried on
The Heinzies left and we spent the next 6 weeks living on the boat loving the summer
We left Whangaroa and set sail for the Bay of Islands
There was another situation, which was quite funny at the time but more cracks were beginning to show.
Dale, a sailor, since a child, always made sure that the dinghy was firmly attached to the boat While we were in Russell, after shopping, I came up to the cockpit and noticed the dinghy floating off by itself...
So the Captain had to dive in and retrieve
It was time to go home.
We had a weekend away, planned with the family.
It is a 2 day sail home
Dale refused to have anyone come up and help take the boat back
He normally was very capable but I must admit, when I left him to sail away ...while I drove the car home…
I just hoped that I would see him again
On the way walking home, he fell over, for no apparent reason
So many falls
Of course Dale was in denial that there was anything wrong with him
Previously, I tried to talk to our doctors John and Catherine about my concerns, but the Privacy Laws, prevented them from discussing it with me alone, only if Dale was present
So I confronted him. He must go to the Doctor and I would accompany him
As it turns out, he did have a headache and he was complaining of lower back pain.
So off we trotted
Once I had explained my concerns to the doctor, she started to ask some relevant questions and I could see she was showing concern
She ordered a cat scan
Because of some of his strange behaviour, there was a worry he might have a tumour
So no tumour but a subdural haemorrhage was discovered.
Nothing in particular to worry about, so they said
Now the Doctor was on his case
From the medical notes, which were given to me a couple of years later
1. Dale had been stood down from driving, for 6 weeks
2. Another scan was scheduled for a couple of weeks later
They did another scan early April
Subdural hasn't got any bigger, feels better
Doctor going to chase Neuro surgeon but may well be treated conservatively
Doctors notes : 7th April… Doctor and Neurosurgeon wondering if there is another cause for his unsteadiness and dysphasia. (Language disorder)
By end of April… Speech and writing are improving
Follow up MRI in late May
Fit to drive locally, but not long trips
So I became to chauffeur, till, the end of time!
Amazingly enough, he never complained
Another of his passions was driving on long trips but he handed it over to me
Just like that
29th June Doctors Notes
“Subdural has resolved. Improved word finding etc but nowhere as eloquent as previously
Binge drinks in the weekend. High risk of falls doing this
Advised to cut back to 2-3 drink only…not 3 bottles, says he will!!!”
Meanwhile his handwriting deteriorated and he really lost interest in most things.
His balance wasn't improving, a few falls off the bar stool at the Pub.
In July we went out for lunch at The Pub, for his Brother’s birthday
We had quite a few wines and lots of fun
It was a great lunch…Climaxing in a massive injury to his thumb which entailed a stay in
Middlemore Hospital
Happened like this...After we got home, Dale decide to bring the Wheelie bin in
Slipped, pushed his hand against the wall, to recover his balance… didn't work
I could see he was in pain, had a close look
His thumb wasn't looking good.
A trip to A & E was in order
Of course, because I too had been drinking, we had to call the ambulance.
They came quite promptly…Just as well, I called the ambulance and not just a cab… the thumb was turning black and the ambulance men gave him gas and then pulled it back into place Oooh painful
So off to A & E we went
My Diary Note, written on the day
8th July 2011
“So we’re the A & E department at the hospital for Dales injury, the staff have been Fab
The long lunch has turned into a marathon
It was more serious than we thought
The Doctor was appalled at how much we had drunk at lunch
Obviously not an 80’s person. No long lunches for him
I guess they see so many drunk people but not well behaved drunk people
like us!!! Mmmmmm!
It’s an interesting ward. Girl across the bay needed to be slung across onto the bed just like on the TV.
Dale meanwhile might have go go to Middlemore Hospital, miles away.
I cant drive, too much wine, the doctor is not impressed with us, I feel!!!
It's all fascinating. Hopefully the ambulance will take us there.
So as the night wore on, it became obvious we were going to have to make our own way to Middlemore. This hospital is miles away
It was suggested, that Perhaps, I could drive him?
At this stage, the nurse brought me a sandwich, then suggested I drink a litre of water.
They thought they would get a cop to breathalyser me, to see if I would be able to drive
“I don’t think so!!!”
No no no… driving out South Auckland late at night, No thank you
So in the end about 11pm, we got a cab to our house
I rushed in and packed Dale a little bag, toiletries etc
Gave it to him and sent him off in the cab with his credit card, so he could pay for the cab
He had surgery, that night, to get the bone splinters out of his badly dislocated thumb
First of many trips to hospitals”
Dales illness was starting to affect me
Note to self on 26 July 2011
For my appointment with John Carter, Our Doctor
Obviously the stress was playing its part on my body
Things to discuss with John
Lesion on leg, Face, Dry patch on chest
Check other spots get Sleeping tablets, Hydro cortisone cream
My thumb clicking,
Most Important!!! Talk about Dale
Meanwhile, there were several trips to Hand Therapy
To work on his hand
A slow recovery. Took a while to heal
Dales Mental health
I noted after this accident that things started to change
From a really positive person
He was starting to think more negatively
He was starting to find it harder to take instruction
Becoming helpless. Playing on the broken right hand.
Not able to use his left hand. I found this very annoying
No going out on the boat, (Thankfully for me)
Around this time I noticed he was starting to do quite irrational things
e.g. coming up the stairs from the garage
Slipping his feet out of his Jandals and leaving them there
So dangerous. Long way down all concrete steps.
One night he washed glasses after a dinner party
Absolute masterpiece...creative?
I gingerly un-assembled this and of course had to rewash
Pretty sloppy dishwashing, but mustn't complain
Mmmmm
17th October
Dale had a bad fall when moving a bronze horse in garden
Knee injury
That healed reasonably quickly
At the end of October we decided to go to Rarotonga
It is one our favourite places in the world
Maybe some gamma rays will help
But the thought of 2 weeks alone with Dale was not appealing
I asked our daughter and her family, if they would join us
Plus we had another family member Lucy, join us
Perfect
So Dale and I flew up first. It was our second visit to this house
So we were quite at home
Just an example of how his standards had slipped
Dale's version of a made bed
So, as the time passed, Dales mental health didn't seem to be improving
Our Doctor finally referred him to a Neurologist
Part 2
Trying to Get a Diagnosis - Party Times
14th December Our first appointment with Edward Wong Neurologist
My Notes for Dr Wong
Lethargy
Lacking in Vitamin B maybe?
Quick to temper when asked questions, then back to normal
Frustration
Lack of confidence hard to join in conversation
I feel like a bossy bitch, thinking for him and I get cross... then feel awful
Frequently he tells me things. It is the last bit of the conversation he is having in his head. So I get him to start again.
Frequently child like
Life passing him by
I wonder some times if he is just filling in time, till the and of his life
Spends most of the day doing nothing he has an iPad but only uses it for playing solitaire.
I have finally got him reading. Not taking advantage of everything the iPad has to offer.
Really hard to pick up technology.
He was great with the engine on the boat, knew how everything worked
Now he finds it hard fix things around the house
Some of this could be part of the lethargy
Confusion main problem, some days really bad
Lack of conscience
Writing...a man who "hand wrote" everything
Memory probably no worse than most people of our age but difficulty in recalling words...part of the confusion I think
This man spent most of his really motivated and motivating many people.
Lots of people started businesses, with his ideas and encouragement.
Balance was bad a couple of weeks ago.
Doesn't seem to be so bad lately at least no so many falls
He has always had great balance and nimbleness
He often walks like a man much older that his years.
On re-reading Dr Wong’s letter, eventually sent after that appointment,
“He suspected Alzheimers, but he felt that maybe was not correct
He noted the possibility of Frontal Temporal Dementia or actually even back then
PSP
He arranged for an MRI to be completed ASAP”
Well it was all very well having MRI immediately
Turns out Dr Wong went on Holiday for a month from 16th December
(Christmas In New Zealand…almost everything shuts down)
Consequently we didn't hear back before the Christmas Holidays...
So we carried on as normal
We had planned having our family Christmas all together up north
So on Christmas Eve we all drove to Matakana
had a wonderful Christmas Eve
Woke with all of the children crying out with delight with their presents
Time for the Christmas Champagne and Oysters and then into big lunch
It was wonderful Family Time together
Next, our Customary Summer Holiday with Lana
I must admit I was nervous about going any distance on the boat with him,
so we restricted our journey to the Hauraki Gulf
Fairly close to home and within help if I felt we needed it
We did have fun though
Log Cajun Moon 4th January 2012
Crew Ms Lana, Mr Dale and Ms Gilli
Took a while to get on board, it's been over 6 months, since Cajun Moon has been out the dislocated thumb put the skipper out of action for months. Not quite the maintenance man we are used to!
We arrived to a mess but Lana (Ex Air Hostess Extraordaire) got working.
We finally got the food stored and In between showers managed to unload the car.
Underway, no rain thank God and about 15 knots wind...on the nose of course.
Easy trip to Islington Bay.
It took about an hour
Anchor caused a little problem it was very stiff, and the breeze was chilly
But Lana persevered. Yay done. Should be easier next time
Lana made great lunch
Prawn cocktail with fresh bread and watermelon and feta sake salad.
Bottle of Deutz to whet the whistle, we read and I finished "Before I Go To Sleep"
But two Xmas holidays ago, we had a gas problem and bought a couple of burners from Mitre 10. Cheap as chips and very efficient.
Found them in a locker. Hooray, but where are the canisters.
No luck, Skipper couldn't remember where they were.
Lana scuffled through the side cabin but to no avail.
No problems we could always go shopping in Waiheke tomorrow.
Had some wine and ate the cheese.
Dale has had a sleep button, put on the stereo, so that we can go to sleep with the iPod going, but we couldn't over ride that so every 30 minutes the stereo turned off.
Oh well worry about that tomorrow!
After a couple of dodgy starts we got the DVD going and settled down to watch
"The Killing" Series2. Gripping, except for the keep button. Never mind!
More maintenance problems. Oh dear
Next problem the solar anchor light is not working, but we do have a real one on top of the mast, so problem fixed.
Next cleaning the teeth...water tasting a little salty, strange.
Off to bed. Worry about that in the morning.
Slept all night.
Thursday
Dale woke up and found the canisters, in the locker, obviously too hard at night.
A bit of ship-shaping and we were off to Waiheke
Dale gave me a car charger for the iPhone and supposedly the iPad...but it appears it only works for the phone.
Oh well we have the inverter and other chargers.
Nice to be back on board, just need to get rid of a few niggles!!!
Changed over to a new water tank, still salty...oh well good for cooking pasta and potatoes. We have many containers of fresh water, so all ok for drinking. Interesting for showers. Salty skin. But lots of body lotion.
Weather is good. Made a nice Risoni salad for lunch.
she had also raided rocket from her garden.
Marinated some red onions,
Schnitzel with mashed potato, cauliflower and grilled courgettes
Interesting in the middle of the night, Dale flushed the toilet...blockage, water all over the floor.
Oh well worry about that in the morning.
Friday
Morning came I looked at the toilet, yes there was a wad of paper.
Aha I think it was the kind of toilet paper...the macerator can't cope with it.
Make a note never buy Signature Marine. Back to normal white.
Just fine.
So weather looked good. Made hot lemon, toast on our trusty burner.
Read swim, sit in the sun, lunch, leftovers.
Lovely warm weather, getting lots of colour.
This is more like summer.
Steak and mushrooms for dinner.
So basically it was a fun time and we got home safely,but it was obvious that
Dale wasn’t able to keep up the maintenance on the boat
March 2012
Symptoms I noted
Hand eye coordination bad
His Gait - Strange
Balance Bad
I’m Missing Dale, my lovely man is disappearing before my eyes
Dale decided that he wanted to see someone other than Dr Wong
so we were referred to Dr Ron Haydon, Specialist in Older People’s Health
Letter from John Carter to Ron Haydon
Dear Ron
Thanks for seeing Dale regarding his increasing falls, difficulty in word finding, lethargy and drop in executive function. He also finds it difficult to write now.
These symptoms have occurred insidiously over the last 2 years. It has become very frustrating for Dale and his family
He denies depression
Before retirement aged 62 he was very active running TV Channels and spending time on his boat
He just sits around all day now and avoids social interaction due to his poverty of speech
There was an issue with a subdural haemorrhage last year following a fall on his boat
This has resolved and his problems pre-date this.
It seems obvious that he has some sort of neurodegenerative problem
Catherine referred him to Edward Wong and it took ages to get any follow up with Edward. A MRI was done and showed mild cerebral/cerebellar atrophy.
He has been referred for Neuropsych testing as per Dr Wong’s advice but we expect he will wait a while before being seen
The first question in my mind is if there any reversibility and I wonder if an acetylcholinesterase inhibitor is worth a try.
I also wonder about his safety on his boat and behind the wheel of his car
Your advice would be most welcome
He has been visited by a Physio from the hospital
I talked to him recently about drinking. He doesn't drink everyday but when he does, he consumes a bottle of wine and is then very unsteady
Thank you
John Carter
After the visit with Ron
His Summary and Recommendations are as follows.
He has a dementia of gradual onset over the past 1-2 years, but the presence of balance problems, lack of arm swing, problems with rapid alternation movements in the arms and mild inco-ordination in the lower limbs raise the possibility that this is a Lewy Body dementia although there was no obvious bradykinesia or rigidity
There alternative of Alzheimer’s disease is also possible but it is difficult to distinguish between the two at this stage
I think he should have a trail of the cognitive enhancer Donepersil and I have prescribed him a dose of 5mg to be taken at night for one month after which i would like to review him
But in the meantime he needs to continue to get regular exercise physically and also to exercise his brain with reading, doing crosswords and Sudoku and playing cards or other memory games. It is good he has started reading again
So Dale joined the gym.
He really enjoyed that and he used to drive himself there and also down to the boat to “carry out maintenance" or just hang out on the boat
I did mange to get him out to Quiz at The Pub on Wednesday nights
We had a great team,
In May, Dale wanted to take the boat out of the water, to wash it’s bottom.
I insisted that he took a friend to help put the boat in the dock
Our friend Terry who Dale had spent decades sailing with, found the whole experience, with Dale at the wheel scary
1976, their first trip Blue Water sailing. Tauranga New Zealand to Vila, Vanuatu and Back
I was so glad Terry was with him on this trip
So while Cajun Moon was on the dry
Dale decided he needed to climb up the ladder, to check on the cover
I had to drive him out there and stood, watching him maneuver the ladder. My heart was in my mouth
Our friend Chris, was his companion. He was nervous
Felt that Dale was making bad decisions
Ever since we were young we loved holding parties. Not so many in Wellington but once we arrived in Auckland...Full on
One of the main reasons was for Dale to get band together and play
We held our first event in our Garage, The theme Rock and Roll. Dale on guitar
We got quite ambitious and even hosted 400 at one party.
Dale put together 3 different types of band for that one
The Shadows, Blues Brothers, Some kind of Western.
We loved it, Dale in particular just adored it
We coerced many friends to join us over the next 5 years
We all loved the food, the Music
New Orleans Jazz Fest, Amazing
Dale in a fit of enthusiasm decided, after we had bought our boat Cajun Moon, that we should start our own yacht Club
The Royal Cajun Yacht Club
We invited select people to our first event
Dale organised Caps for everyone that attended
It was imperative that they wore them
Royal Cajun "Occajuns"
Dale designed a flag available for members to fly off their boats
Dale’s 60th Party was held in our studio in Parnell
That was an excellent venue as well
Here he is being presented with a Cartoon, drawn by our friend Pete
But by 2012 even though we still had parties, most of the work was done by me and our kids
Dale just couldn't do it anymore and rustle up enough enthusiasm to really help
The last time he played his guitar, was at a party we hosted in April 2012
Part 3
Moving House and Off To Raro
It became obvious that we needed to move from our townhouse in Parnell
we had a couple of dangerous staircases and the family was worried about major falls
He slipped down the spiral staircase which was the route to the bedroom
and put a hole in the wall
Notes from Ron Haydon May 1st
Dale attended for review with wife Gillian on 1.5.12. He has now been on Doneperzil at night for 4 weeks and reports no change in fluency of his speech and if anything, his balance is a little worse in that he has had three falls
These falls appear to occur on rising from sitting position to standing and this was one slip on the bottom step of a stairwell
Ron upped his dose of Donepersil and there was another appointment set up at the Neurology Clinic
So off to the Clinic, we trotted on 25th May, to see the Neurologist Edward Wong
According to him
“It was agreed that Dale and I felt there hadn't been much change
Spending a lot of time on the boat, sadly he doesn’t play the guitar a lot anymore
He was alert. memory function has improved
but he is having problems with visuospatial tasks.
His gait was narrow based and steady, there was normal arm swing, there was no axial rigidity, he has got slowing of vertical more than horizontal saccades with normal pursuit eye movement
There was some mild rigidity on the right side and mild slowing of rapid alternating movements in the right upper limb. There was no weakness
Key notes, once again, from Edward Wong
“I am suspicious that he might have PSP given some abnormalities of his saccades
The three clap test was also positive
He denies any hallucinations
The possibility of Lewy body disease has also been raised
Regardless the Donepersil is an appropriate treatment and there does seem to be some improvement in recent memory function even just after 2 months. Whether this is due to the medication is unclear, but it is encouraging
I plan to see him again in my clinic in 6 months”
June 2012
So the family came in and helped us clean up the house for sale
God 20 years of stuff. All gone
No Dale on the guitar, this time but still plenty of Music just without him contributing
House for Sale
and moved into an apartment in The Stamford Plaza Residences
Loved that idea…before the Hotel was The Stamford, it was the Regent and in the 80’s we had spent a lot of time there having fun
Great memories. Now could make new memories in the 2000’s
On the day, we settled we went for a 3 week holiday to Rarotonga
On arrival Dale had a fall which ended with his brand new ukulele in pieces
Once again we blamed his lack of common sense but I guess it actually was the PSP and the bad balance.
I used to get so cross.
But the holiday was worth it.
Dale just wasn't keeping up the maintenance and that doesn't work for boats
Even though he was going down everyday
Obviously it was all too much for him.
He told me he had to replace a screw and just couldn't manipulate the tools
So we stripped the boat of “us” and on the market it went
Unfortunately because of the low level of maintenance, it wasn't such a great buy
Our son Dan thought we needed a last Family holiday on the boat
We had owned the boat since 1991
Lived on it longer that we had lived in our town house
A sad moment but had to be done
We needed to say Goodbye
My Log, the first day on the holiday
Log Cajun Moon, 27th Dec 2012
Present Dan, Helen, Sophia, Joseph, Dale and Me
An easy start to the day
Sent day before doing the laundry
Cajun Moon had been emptied for sale and bedding.
All a bit damp from being in Katie’s garage
So packed up our cars
Drove to Westhaven Marina
Left Dale to unload small things and went to shop for supplies
Came back to see him in different clothes
Mmmm dropped the keys in the water, including key for car and house keys.
He jumped in after them to no avail
Luckily there was a spare car key in apartment
I knew there was a reason, I left the laundry for me to load !!!
So I went back to get it… there was of course some stuff left in the car, which needed to be unloaded Everyone arrived, unpacked
Checked for the umpteen time with the loved one/Skipper about diesel, assured it was ok
But apparently it turns out we are very low
So off to Diesel Shop
Problem fixed
Dan takes over as Skipper, Dale not really capable unfortunately
Of course water in Tanks still salty
Never mind have plenty of fresh bottled and lots of wipes for washing bodies
Finally we take off… the sails are up
Sophia has panic attack… wants so get off so our plans to go to Kawau Island changed
The Thought of a panicked teenager for that 5 hour trip!!
Let's go to Islington Bay, no problem
Got out the rescue remedy, for her, seemed to work
Helen made Greek salad, nice with a little rose for lunch
Dale meanwhile in my sweatshirt and pants.
We discover he didn't bring any clothes
Thought he had some on board
Mmmmm Cajun Moon was emptied for sale.
It had been empty of non essentials since early October
Oh well
Dan offered one of his t-shirts
Noooo
So he sat sweating all afternoon
It was a lovely day
Arrived at Isi bay, of course, anchor issues again
But finally sorted...Cup of tea would be nice
Gas please
No… the bottle I unloaded from the car was empty despite Dale trying to assure us
That it was full
The cold food option was looking good
But suddenly Dale remembered we had the trusty burner from 2 years ago
And plenty of gas
So Dan made Pizza in a kind of "Dutch Oven"
Very innovative
Lots of swimming for kids, rescue remedy seeming to work for Sophia
Games, Words with friends...sort of scrabble
Then Yahtzee
Great fun
Late dinner, so to bed not Long after
Finally got Dale into a Pareu for bed and as his undies are drying in the engine room
he is now resplendent in nice silky panties
A good start to Friday As we had gas, hot food was abound
Curry on toast for brekki
Another day begins
The Skipper did get a turn on the wheel
Sadly his last time as Skipper of the Good Ship Cajun Moon
As luck would have it we have many friends throughout the North Island so we had plenty of places to stay.
It was real reunion at Dave's birthday. Here we all are on the wrong side of 65. Friends for nearly 50 years
On a brighter note. How lucky are we all to have been friends for so many years
We arrived home just in time to celebrate our 48th Wedding Anniversary.
Just took the lift downstairs and a wonderful Japanese Teppanaki Lunch awaited us
Fun living in a Hotel
A trip to Matarangi in April to stay with our friend Jeannie and her beach house
I organised a reunion, I was getting sick of meeting up with friends at funerals, so lets have a joyous occasion
So glad I did, we have lost a few good friends since then. Including my Dale
Dale now just a passenger at Parties, having fun but no longer the driving force
Special times
Katies 40th in May
I suggested that he practise writing. He copied from a book
Part 4 Moving On - Mr Mobile
Meanwhile our lease had lapsed and we needed to find new accommodation
So it was Goodbye to sunbathing at The Stamford, to sunbathing at our new digs at The Viaduct. Another of Dale's passion
Baking in the sun
But things can be replaced. Nothing can replace Dale
The travel continued, it was still easy to travel with Dale a trip to Wellington for Gerry's 70th
Friends over 50 years
On the way banged into John and JT. Went to the food Store for an other drink
Dale had a major fall, back off steps, Luckily only from the 2nd to bottom.
Stunned but nothing broken
Reminder to self…When next out, as few stairs as possible.
Found a table on the flat and whiled away an hour or so with John and JT. Dale drank Lemonade for the shock
Off to Hamilton with Lana
Hamilton was a great success. Staying with Debbie and David No falls I think! All pretty flat. Dale really enjoyed the company, but on our return he was pretty tired
Oct 7th 2013
This week was tiring for him. Sheryl arrived to stay and on Wednesday, Larry, Debbie, Lana and Sherl had dinner with us. Great night
Dale was too wobbly to go walking with Jane, so they played Connect and practised writing in the sun
We are loving the sun in this place. Great dinner plenty of leftovers fed us for a couple of night
October 12th
Dan and Helen off to Raro on Saturday morning. Sophia off to scream loudly at One Direction. Joseph bused here.
I came back home after dropping D&H at the airport, so spent the morning preparing for move to Pine Street. Joe, Dale and I went to Shed 5 for Burger Lunch.
Oh I forgot had great day with the Kids, invited to Ms June’s for lunch in Waiheke. Braved the waters and had 3-4 hours with her. Lovely. Quiet Saturday night.
Sophia off to One Direction
Sunday, after recommendation from Stu and Ivonne to see “Gravity”. Exactly as I expected.
I hated it. Nothing to do with the film I just hated the concept, spent most of the movie with my hands over the eyes.
Monday Oct 14th
So the routine sliding in.
Drop Joe, take Sophia to school, pop in home, delete TV Programmes, clear emails on Mac. Lots of things to do
Left Dale happy in Pine Street
Oct 15th
Found a huge bruise on Dale before he went to Miriam , the physio
Forgot how he did it
Suddenly came back to me Falling down the 2 steps at The Food Store, after lunch at the Viaduct. Really nasty
Oct 16th
He had a great walk with Jane today , she is going to send me a list of things that bother him. I bet it’s large
Fitting in well at Pine Street
Dog panics him a bit, but thats fine
November 4th
Been a good week, only one real fall, of course resulting in a breakage, luckily not Dale but our camel table. Bill Hoffmeister’s painting fell off the wall but no damage
We have had 2 platters broken, 1 lamp and now the table, putting on pyjama pants in fact
Drove to Omaha and had lunch with Andy
Saturday, Kids came over. Pizza lunch
Friday...Larry showed us his doco. very good. Lana for dinner and Sherl staying
Jane did send her review of Dale made me cry
I looked at him this morning, he sleeps like a dead person, lying on his back a funny face
Little a bit eerie, guess dementia is a bit like dying. Part of the personality slipping away.
A little bit more of Dale disappearing
Big week coming up
Melbourne Cup Lunch
Quiz night
Dale got tooth removed on Friday
Gym for him but not for me
Oh dear I should though. I have got to get my head around it
Wednesday Dale at Gym with Jane
We had a great time at Melbourne Cup Lunch, Nice Food. Lost all my money
Larry, Johnny Day, Craig, Jude and Sheryl joined us
Johnny Day made Dale laugh so much. Sheryl said we should him to Dale as a present.
They look so alive there)
Dreadful weather. Dale a shaky at the end but happy.
Quiz today Need all day to get ready for it
So Jan 9th 2014
It’s been a while since I made an entry Dear Diary
His co-ordination, balance and logic going downhill. Had a major fall going up to Smith and Caughey, to buy me a present for Christmas.
I was so touched, a lovely purple silk scarf...it matches his deep purple bruises
He did worry me though, he was away for ages, so I got in the car and went looking for him.
Of course, he didn't have his phone with him. I found him with a guardian angel on the footpath in Hobson Street. I was so cross but pleased he was safe also, I loved the fact he had gone shopping for me
Not quite so many falls, these days but there are casualties...a broken bowl and iPad have joined the platters, lamp, nice candle on the list
It seems his brain can't comprehend that he can use his right hand and he has some drops including dinner on the floor tonight.
Note to self, only give him big white bowls while sitting at the table, actually another note to self, lets buy some plastic bowls, lighter to hold, could save some drama
Have to be careful not to be cross, he cant help it. It’s hard though
I have to be fairly constantly on call but can leave him for a few hours
Going to the Pub tomorrow, to watch Dan Play. Craig coming with us
Dale has been enjoying Craig’s visits, must get Johnny Day back.
Sat Jan 11th
Bought Dale new pillows, light bowls for cereal etc and a tray earlier in the day
Johnny couldn't make it but Mary Will came.
Fun night and not too late home excellent
Day started badly
Heard Dale fall didn't sound too bad but checked anyway
Worst fall yet. Blood every where
Took him off to A & E Stitches and another ACC Number
Thank goodness didn't get blood on the new pillows
Tues Jan 14th
No falls for a couple of days
Don’t want to jinx anything but fingers crossed
Funny story, I went to the Osteo and as my knee surgeon suggested that a walking stick would be useful for my (1) knee and (2) left foot which which is causing me plenty of gyp
So Osteo said get a Kathmandu Walking Pole. Popped into the shop, managed to 40% discount on Chris’s account
Very proudly used it to get home
Dale took one look. Bye Bye Gillian, Hello Dale
I now have to buy another so back into town I will go
Seems reasonable !!!!
He loves it
Thursday
Stitches out for Dale. Massage for me
Pain for both of us but relief in the end
Trying to get to see someone about Dale
My Poor darling man is distressed
It is so sad
Just want to hug him and let him know I am there for him
Wounds healing well
Drove home let Dale out by door to get the trolley
Door shut
One minute he was there… Nek Minnit gone
Another topple. Seems the only injury, broken cheap sunglasses
Landed on his left hand. Thank God, as the right is nearly healed, don't want more damage to that
So we just box on
Friday
Gym took a lot out of him so he didn't come for lunch with Lucy and Me
Had an interesting fall, no damage - sat on the edge of bed of course slipped off
Could see it happening couldn't stop it
Sat 25th Jan 2014
Not a bad week, some falls but he's rolling with them, no extra injuries
Weather windy, sometimes chilly, not exactly summer weather but it is lovely today
Busy on Wednesday, Pieta and Sherl here. Dale ate lunch with us, but back to his room
I'm trying to get him out of his room as often as possible
Dinner last night - lunch at Pub with Dan, Helen and Sophia
Sophia did well on her exams. very proud of her
Last night, had Derek Lowe, Terry, John, No JT and Julia
I think he en joyed his day, though it must be so frustrating spending his life as a spectator
Sunday
Shouldn't speak too soon, another fall with a grazed head from the sun lounger, but cheerful enough
My face flannels all need bleaching from the blood!!!
Tuesday 28th Jan
Broke the mold today. Have hired a walker
Watch out Auckland...Speedy Gonzales is on the move
No injury. But he feeling very safe with it hope this works
Wed
There has been a couple of tumbles - learning to drive is taking time
Bit of a step down from the Mini Cooper S
Anyway hopefully he will get the hang of it
Dale didn't make Quiz tonight - big day with Gym and Handworks, they are still working on the wrist injury from September
Thursday 30th January 2014
49 years married
Decided to take our Best Man Craig out to Lunch
Off down to the Viaduct. Giving the walker an outing,
Friday
Went down to Hamilton, great night with
Debbie David, Julia and Lana
Dale has thrown away the walker in favour of 2 Kathmandu poles. Seems to work quite well
So luckily I had only rented it for a week. It went back
Monday... went to the pool today
Dale tipped sideways off the lounger but had a great swim, his first one here. He loved it
Tonight did quite a tumble going over to turn out a lamp. No injuries but I daresay there will be bruises
Big few days coming up, lots of rest required, I think
Sunday 9th February 2014
His logic is deteriorating, getting up from chairs too fast, lots of small falls, no injuries, landed on me
It seems he likes the 2 sticks but tries to carry things as well
I shouted tonight, told him if he had a bad fall he could end up in hospital.
Getting more childlike and frail really.
Got people coming to stay and a lunch on Tuesday
Woods, Dobbies and Skidmores
Should be great fun
Dan came over to play chess yesterday
On Friday he had a little dance with Jane and had a few tears with her.
He is so frustrated
Going to try and get help
Dr Wong once again not coming to the party
Dale told me he is trapped in his body
So sad
Thursday Feb 13th
Finally heard from Dr Wong
It seems that Dales dementia is actually part of Progressive Supranuclear Palsy. Symptoms fit and signs of it show in the MRI
He has suggested a new drug which he is sending to me. He also suggested physio.
So I feel we are making progress in helping Dale
Miriam our Physio is going to contact the Neuro Physio at the hospital for a programme with him and Jane to implement it
Also a new person from Alzheimers Society has contacted me, he is familiar with PSP and he is going to help me
Great
Had another bad fall on Wednesday night, another cut on the head for him.
Back to the doctor, sigh!
Crash in the bathroom Friday, only bruising though
Thank God for his tan or he would be black and blue
Part 5
Big Birthday and Hospital
Thursday Feb 20th
Had some headway Occupational Therapy is coming on Monday
The lovely lady Lorraine McDonald from The Neurology Department has been in contact and she is referring us to Neuro Physio and Speech Therapy. Once again a waiting game
Had our last appointment at Handworks. Susan has been great with Dale he seems to attract great affection from his helpers. Lucky him
One of his falls has resulted in an injured shoulder
So back on ACC back to Physio. Quite painful poor thing
He’s keen on the therapist so we are working on that,
About 7 weeks to go (wonder how he will be)
Still smiling that lovely smile
Quiet day yesterday, we went to dinner at John and Helen across the garden
Very nice night but Dale choked on tomato skin with mouthful. Lana did the Heimlich maneuver . Just as well, he was in distress not sure if this is a sign of muscle problems in his throat. I need to keep a eye on this, will check out if this going to be a problem
Sunday March 16th
Lots of things happening. OT lady Kate has been in touch, we now have stool for shower,
and surround for toilet
Lounge suite lifted, to make it easier to get on and off
Started on Sinimet drug
Monday March 17th
Have noted today no more falls. Katie has bought him a helmet to protect his head
Got an invitation together
Full of people he loved.
Loads of Music
Another Cajun Occajun
Gosh, It’s now May 13th
Tomorrow I go into Mercy for the new knee
St Johns Ambulance coming to give us an alarm for Dale
Some insurance for us all
Sheryl and Lucy coming to stay
Fridge, Pantry and Freezer full
Dale still falling but seems to fall softly, not so many injuries
He has an awful growth on his face but so far not sinister maybe just an infected scratch
So things just like normal or as normal as it can be
July 27th
Knee done, and I'm back driving luckily Dale is enjoying my crutches
More trips to hospital, but just for eye checks and injections
Dale just had another fall on the chest with the platters funny how the cheap but nice Stevens Platters survive and the beautiful expensive broke
So the tally is so far;
A Broken chair and one of Lana’s chairs, both mended though
Camel tableEnd of wooden desk - some glasses
There is now a Dale free zone at the end of the room
Luckily the damage to Dale is not so bad now
Bruises. one cut 10 days ago just above the eye
Just falls
Sunday Aug 2nd
Had a great feeling of sadness
I’\e been archiving photos of our past life making a book about places we have lived
I felt I needed to do something in Dale’s room. His man cave
Going to get some of the prints out of storage this week to lighten his room. All of his prints are quite dark, musical, but a lot of black
Anyway the day ended up as a pleasant experience, played some great music on Spotify. First Frankie Valli which brightened me up and encouraged me to clean the lounge and kitchen all sparkling.
The rain fell softly, we opened some sparkling wine to match the brightness of the house. Listened to Barbra Streisand and I read. Dale lay there listening. It was a pleasure
Today is sunny bright and we’re back on track
Thursday 14th August 2014
Had a moment of great sadness today. Just went to see 100 Hundred Foot Journey movie with Helen Mirren
Lovely shots of France.
I realised that we would never go to France, Paris, Europe together, ever again.
50 years together, changing everyday
But we do have wonderful memories. It’s life really
It was a feel good movie
Happy and Sad tears’
2009
AND THE FALLS CONTINUE 2009
Part 6
Friday August 15th
Two falls this week
A grazed head and tonight a heavy fall on his ribs
Looking red and sore. Might be a trip to A & E tomorrow
Saturday
Off to Medical centre and sent into A & E after X-ray
Diagnosis, Broken Ribs and Collapsed lung
Before they started working on him
Poor thing, he was frightened and so brave
So there was another X-ray and 6pm they removed the drain so I went home’
Monday morning waiting to hear what is going to happen
Monday 18th Aug
The Physio Girls got him up and moving
I think he is really enjoying the attention from these lovely young ladies
Her report follows
Elizabeth Body Talk on 20th August
Dale came into the session showing two different aspects of himself separately. One side - his spirit was young, healthy and with fluent speech and this spirit brought his body along too His spirit supported his body like one would a grandparent. Lovingly, patiently but beside it. He said "My body is a bit battered and could use some TLC on a lot of levels." Then he also said "I know a lot more of what is going on than I can let people know."
Then he showed me how it feels for him to be in his body and move around in it. This was an interesting experience...His legs felt huge, like big pillars, hard to move and balance and the same with his arms, while his torso felt strong but unable to control the limbs."
Then it came up that when he is home if he could avoid wheat and dairy for one day (only) once he is settled at home. I asked why, and I got, it will just give his body a chance to clear a few things (from the hospital experience, medications and energies).
Then Dale went on to say "I am at a loss as to what to do. But I know that I am loved. The care Gilli has given me and continues to give is massive and comforting. The rest of my family too, I know they love me. (Even you Elizabeth :).
Note on my iPad from 21 August
I am concerned about Dale going backwards
I know he is on pain medication and is probably very uncomfortable
But he is looking like a stunned mullet
Also please make sure that he is not having Sinimet
Perhaps it might be a good time for him to see Edward Wong while he is there please
Friday 22nd
Still in the surgical ward awaiting transfer to rehab
I’m noticing a decline in his mental health
Cant walk on his own at all
Right foot really bad
I actually fed him yesterday as his hands are useless
This could be the pain medication but I’m not sure
Saturday 23rd August
Katie took him for a walk around the ward
Sunday 24th
I wonder if Elizabeth's Bodytalking is helping
We played Checkers on Friday, he was useless so I let him go a couple of times, well
bugger me, he cornered me. I thought I was sweet, so brain working better
See what happens today
We thought he looked better today.
Not so grey looking and some almost whole sentences I am optimistic about the rehab
Wednesday 27th
Went across to Rehab on Monday afternoon, Kate and I got there Tuesday around lunchtime, took him some Cinnabon that I had baked
 |
| About to go into the oven |
 |
| So tasty |
Ward is nice enough, cant say the same about his room mates.
He is still on 24 hour watch.
The Impulsive Bug is stopping him from going solo.
Oh next to him a poor old soul, 90 if she’s a day
Crying moaning, nurses trying to help her. Quite distressing. Another old lady next to him totally dead to the World and the old lady opposite who seemed kinda normal.
The earphones that I’d taken over before were too tight on his head....well after all they do belong to Cleo who is 9 years old
So I get on the bus into Downtown Dick Smith. Bought him some grown up ones
Thank God for the Gold Card
Living off the Taxpayer. Me on the bus, Dale in the hospital, being fed and watered
One plus we can go to the lounge and sit at a table. Buy coffee from the Planet Coffee
Today Bus over
Now 2 poor groaners. Oh God Poor Dale
Actually he doesn't seem to mind, I think he has accepted all of this
Thursday 28th
Got inspired by Anthony Bourdain and decided to make a pizza for Dale. He loved it,
 |
| Actually tasted better than it looked |
Still impulsive and tires easily but medically fine.
Lovely young doctor Georgia
I’ll get a photo of her. Dale wonders if she played netball, he had noticed her long legs
Must be on the mend…mind you after those old, in their 90’s groaning women around him
Mmmm
Update on Dale 29th Aug from iPad
After being the youngest person in his hospital Rehab room,
The plan has been to get him back into the land of the living as quickly as possible
Medically the lung is in good shape
Now, Just having to work on bringing the Impulsive behaviour in line.
Currently, he's so keen to get up without any plan, which means with his terrible balance
Fall Risk: High
The Physios are working with him so hopefully!!!
He'll be up and running on his Zimmer Frame
Could be interesting, some fabulous cars over the years
Now Zimmer Frame. Oh well
It is British racing green so that's a plus
But the best sign of improvement. He has a lovely young Junior Doctor
"Is she a Netballer?" he asked
"Why?"I asked
"Lovely long legs"
Twinkle back in the eye. Good news
Noticing when he smiles frequently it is a grimace
Seems to be a PSP sympton
Luckily he hasn't got the frozen face yet
Wednesday Oct 22nd
Gosh just checked he was discharged from hospital September 9th
Goodbye Auckland Hospital. You were great but time to come home
Part 6
Some People Have All The Luck
Out of ReHab Off to Raro
He had 2 weeks in Rehab
Had to make few changes in the house. Put 1 sofa in storage and bought a Lazy Boy chair, goes right up to standing.
Two sleepy old men
Wonderful time very social
His "Modus Operandi " at Parties
Bed
but that never deters Dale
Looking forward to Raro, sunshine and family time
Jane finding Dale much slower, can only walk about 500 m on the treadmill
Labour Monday
Had Jude, Jeannie and Lana over for drinks on Saturday.
Dale stayed in his room
I lunched with Cath, Lana and JT on Friday
Quiet day Sunday, we went for an outing today
Picnic in the car at St Heliers
Ice-cream and home
Out for about 1 1/2 hours about all he can cope with
Back in bed already
Cynthia, Shower girl discovered about 10 days ago, 2 bad grazes, knee and leg.
Bit worried about the shin, red possible infection
Doctors, dressing and antibiotics, district nurse 1 day only... all well now
Will try and fit a movie in this week
Been doing a few picnics in the car
Email to friends
We did have a wonderful time in Raro, superb family time
Giving Dale, a holiday and for us all, to remember.
We suspected it might be the last time away
There were no more after that
Managed to keep Dale safe from major falls before we went away
It was useful to have help traveling. Wheelchair at airport both ends.
Leaving
Falling there was not a good option, all tiled lots of shape edges and an impulsive naughty patient. Slippery floor
Everyone helped... even the kids watching out for him
He is such a nightmare to keep an eye on, the bloody impulsive behaviour.
We know a lot of it he can't help but I secretly wonder if he does it to piss me off. Ha ha
Anyway can't keep an eye on him all of the time so
One fall into wardrobe door. Cut head, beautifully butterflied plastered by Katie
Healed nicely, no infection
Slipped over whilst putting on his t-shirt.
So I found him lying on the floor, t-shirt stuck on head, grabbing his ribs in pain
As luck would have it they only appeared to be bruised not broken.
It was the same side that he broke couple of months ago... of course it was
Actually he had had an injection to strengthen his bones, when he was in hospital
Seems to have worked
I guess if he needs some therapy. He could use the same ACC number
The rest of us didn't injure ourselves at all.
Even though we did get through an enormous amount of wine
We also consumed plenty of beautiful Tuna
Albacore $10 a kilo
Sashimi grade $20 a kilo
Divine
Dale and his kids
He spent a lot of time in bed but he did like the beach and the Dale Conga Style was born. One in front, one at back.
Poignant,
Up the steps to Whatever Bar
Dale loved lunching
Whatever Bar a favourite
Coming home was easy.
Check in lounge, wheeled out onto the Tarmac
Hoist onto plane
First on the plane, that was fun
Part 7
Christmas and Wedding Anniversary
Had dinner with Stu and Yvonne at Portofino across the road
We took our friend down in the lift and when we reached the street
He was very dizzy
So we sat him on his walker and Katie drove it
Enjoyed going home even more, it seems
Turns out could be a good workout for me
Time to get onto Kate at Occupational Therapy Service
Saturday 6th Dec
Not too may falls except today, when I was out, he managed to fall into the coffee table damaged our 1930s people piece also broke a bowl
Don't know what he was doing, I was out for a while. No damage to him thank goodness
Bit stressful but hey that's life
23rd Dec
Over Christmas it will be good
He's is finding it quite useful sitting at the table
No real injuries though but quite a worry
Everytime I hear a thud it gives me a fright
Never sure what I am going to find
Poor poor Dale no fun for him at all
Jan 3rd
I just reread Dec 23rd
There was another fall a few days ago small casualty handle of jug
Bruise for Dale, everything swiped off the coffee table again.
Putting in his shorts after coming in from lying in the sun
Christmas was good Heinzies staying here lovely day…Dale spent a lot of time on Dan and Helen's bed
Another service that we entitled to.
Jane said it was his worst day in the gym
He is so tired but does like getting up around 5 for a drink, dinner TV then bed. Fell over a wheelchair tonight while trying to close the blinds
No damage....I like that phrase
But he has taken to the wheelchair so we can have outings around the Viaduct
Dale with his brother Craig and Phil, friend and colleague for over 30 years
And here we are only 9 years ago on the boat
January 29th 2015
Tomorrow 50 years married
Amazing we got there, its a long time...
He is falling everyday now. In fact tonight twice in 10 minutes
Happens almost always putting on pants, undies, pyjamas
I think the dementia is getting worse
He's not retaining info
Amazingly even though he is frustrated, he is still cheerful
Sometimes, I could shake him
But he can't help It and I have to remember that
The boy that made my heart zing, has well and truly gone
Sometimes when he is watching TV the old Dale appears, particularly things that make him laugh
You get a glimpse of that handsome intelligent face
Oh well roll on the weekend that will be fun
January 31st Party Day
Dale did enjoy it
Part 8 Moving On Again - Hello Ascot
Sun Feb 8th
Our last 3 weeks at the Parc, we have been given notice of non renewal of the Lease
Sad I really like it here, good for Dale but c’est la vie
Dale is probably falling everyday now
It’s so hard to see him struggling to speak, to comprehend, to walk
So this 3 weeks, getting ready to go, just hope the weather is beautiful so I can use the pool a lot.
Very selfish but I have enjoyed it this summer
Luckily I found somewhere to live fairly quickly
Feb 14th
So I can really get excited about moving, everything falling into place including Dale!!!
While I’ve been planning...Dale's been falling
It seems like he can’t or won’t retain simple safety measures - No major injuries thank goodness
I know everything is so frustrating for him but I wish he would listen or actually retain info.
Got a new toilet surround to try and keep the wee in the toilet and not on the floor
Worked out best way to clean the floor
Spray Janola direct onto flow till it fizzes away, wipe it off, rinse it down
Perfect
It’s not easy being Dale,
I guess who would believe that handsome, vibrant, stroppy man is reduced too this
Oh well at least he is well... except for injuries’’
Feb 14th
Dan's birthday celebration Had a great night
Too many drinks for me but good fun
Got home Dale fell over getting out of the cab Driver helpful
The head again.
Washed head wound
Still having problems with peeing on the floor
I just don't know how to help him
I went in today he was fine. then tonight... all over the floor,
I suggested he sits down but he’s not sure about that idea
Its a worry
Wounds on head healing nicely, even if his head looks like a road map
I decided to cancel his health insurance
Doctors bill are now tiny as ACC picks up the slack
Anything else, now that he is in the system
The Public Health looks after him
So grateful
Feb 18th
Yesterday first trip to Eye Clinic. We have been referred to Public for this
He has a Macular thickening. There is an injection that he needs which costs a couple of thousand dollars
Phew, thanks again Public Health
This injection helps him from going blind
So it was an interesting experience
You go round in a little circle.
Reception, Waiting Room1,
In for Eye Test,
Off to next waiting room,
Eye machine
Next waiting room.
Wait, wait, wait for the Doctor nice young man, then off to procedure room where he got his injection
They did warn us in the letter, sent with the appointment booking
Allow 2-3 hours. Correct
Going Private…all over in 30 minutes but that costs and we don't have that option now
As luck would have I have my Kindle, keeps me busy
Dale just sits there and probably contemplates his future, which is looking bleak
Sat Feb 20th
You've heard of Eric the Half a Bee. I feel we are living in Eric the half a House.
The prints are off the wall
Stuff is starting to be everywhere
It’s time to move
Oh dear but he is OK.
He told Sheryl, he is frightened about moving
He’ll be fine, it’s going to be great
Last night view from our old flat
All settled at Ascot. This is a great place for us
Just in time for a wonderful firework display, Welcome to us I thought
Have given Dale the Master suite, it has a wonderful view, looking out over Rangitoto and the Hauraki Gulf, our old stomping ground
A sensor pad , which is going to be funded. This will let me know when he is out of bed.
So I’m alert when he falls
Most spectacular was fall into the bath. No major injuries and it was quite funny until we realised that getting out was very difficult. Took about 15 minutes
WRONG!
Too late
Anyway done now and any fall will be soft for him
Banana
Recently with the amount of chores associated with moving... I had been late back and his lunch was delayed. He needs that nutrient - I think will help with falls and plenty water - regular food… trying hard not to scold him
Cant help it sometimes. It's the loss of common sense that is most frustrating or trying to be helpful in areas would mean more breakages for himself and precious things so I spend a lot of time apologizing It’s hard being Job! (meaning patience of!)
Whoops the wall is taking a beating too
Meeting with Edward Wong Neurologist at 9am
Massage: Tuesday
Eyes : Thursday
My birthday Sunday
Part 9
Birthday Time Yet Again
Stu and Yvonne coming to stay for my birthday party
Beautiful day for my actual birthday
Yvonne took his lovely shot of us, before we went out
Almost hard to believe what is happening in his brain
This is a wonderful service
There was room for the 4 of us and Dale's wheelchair in the back
and an extra bonus, The driver came back, took Dale home and got him settled
It meant the rest of us could stay and play
Dale holding court. Bit poignant, used to be him on the stage driving the party, not sitting in his wheelchair
Can have people to stay, a room for me
and Dale in his man cave with the beautiful view
Sunday 22nd March
Been a busy week, had 2 appointments at the Eye Clinic, the resolution is they cant do anything else for the Macular thickness except for the 3 monthly injection, with reduces the swelling.
He had a fall in the middle of last night
I didn’t hear it
His sensor pad came last week but we couldn't get it to work.
It seems we always seem to be behind the Eight Ball
Kate took it back and will return with it on Tuesday
But of course it seems it triggers falls
i.e. meant to fill the bath with cushions - too late…fall
Sensor mat late…fall
We are trying to get it right but it is a bit of a roller coaster and he thwarts us all of the time
cut on the head, could do with stitches -
I'll leave it today and if it looks worse tomorrow, could do with a trip to the doctor
Beautiful day today, sun shines on this balcony all morning - lovely
So its off to change sheets and shower Dale, get rid of the blood - not too bad maybe I should get him red or brown sheets instead of white
NO NEVER…white it is... in this house
The cut did require a trip to the GP
Another scar
And it certainly worked, very loud alarm
I'm out of bed in a flash
Part 10
First Visit to St Andrews Dales Holiday Retreat
26th March 2015
Diary note, sent out to friends
So the day started off well, at 00.40 am
The sensor pad, the warning sign that Dale is up and about,went off
Got up to check
Obviously getting up to go to the toilet, but also for some reason his
alarm on the radio was going bananas
Turned them both off
Reset everything
Back to bed
Back to sleep
Big day
Supposed to go to see. Dales holiday retreat, St Andrews for when I to to Wellington
Plan to leave at 9.30, for my 9.45 appointment
Got rung about 8.30
Usual Lifewise lady can't be there to shower my friend but another one
sorted
She has been here before no worries should be there about 9.15
At 9.30 I am trying to track her down
At 10, I've canned the holiday home appointment
Apparently she went to wrong place, was told naturally that she wasn't
required
Do. I still want her "yes please"
At 10.30 I gave up and showered him, as we were due out to the Burt's
about 11.30
While he was showering, guess who arrived, the lady
I sent her away
So he got dressed and had a lie down
Katie arrived with Miss Cleo after doctor appointment
So off the 3 of us went to Devonport
Bit late...got there about 12.15
So after very pleasant lunch with Pete and Elpie...dropped Dale at home
and by this time we were running a little late for Joseph he was out
early from school today
Never mind went to the school
Not There
Rang him
Oh no he was at his home
Oh well, picked him up
Dropped him at our house to join Cleo and Dale
Off to supermarket as kids were coming to dinner
And missing some ingredients
Sophia and Mia had arrived, so I gave them chips and dip instead of usual
Movenpick visit as bit late for ice cream
They went for a swim
Corn fritters and Greek salad
Thought I would check on Dale...couldn't find him
Panicked, then looked of course in the bath, and there he was, in amongst
the cushions
Had got up to go the toilet
Left the walker behind and was in the dark
OMG
All not allowed...smack on the hand
But At least it's comfortable and warm in there
He was so good, obviously desperate to go wees though
And had held on
So nice dry cushions, thank goodness
Managed to get him out reasonably easy
Got this down to a fine art now
Over to the toilet
Mmmm...missed the toilet
So off with the socks, and track pants
Out with the mop and cleaner
Right all done
Back to dinner
So kids eating up
Cleo accidentally knocked over her orange drink all over Mia's skirt and
the floor
Luckily the mop was handy
Cleaned it up
Mia into bathroom in floods of tears
Then she finally came back...I had cleaned up
Had checked if she wanted any more dinner
Negative, so I cleared the plate
She was more cheerful now and wondered where plate with the rest of her
salad was
In the sink of course, oh dear
At least no more tears
So prepared the pudding
"Everybody happy?
You bet your life they are..."
Ate up large, cream and jam pastry sandwiches
Then they played some cards
Sophia and Joseph go home
Neck Minnit
Cleo in floods
Had done a wet fart
She is on antibiotics, Shit happens as they say!
As luck would have it, I had baby wipes and there was some bikini pants in
the tog cupboard
She's fine
Looked good in bikini pants, Ugh boots and sweater
New look?
Poured wine
Chris arrived to pick up the girls
All gone home
Dale fed and watered
Pour another wine
Mustn't have too much, might have to get up to the baby monitor again!!!
So that was my day
How was yours?
Xxx
So finally got to look at St Andrews, where Dale was going for respite care
I was going to Wellington and it was decided that it was too much to ask anyone to look after him
We are entitled to respite care
It's a very attractive place
Turning 71.
We just had small lunch with old friends and family, a little different from the previous year's bash
Karen made him a birthday cake
He is starting to look so frail
Always a pleasure to have her.
Joyce went to stay with our daughter and Dale went to St Andrews
Amazing how much stuff, one man needs for a week
I bought 2 Petals in memory of my Father and Uncle, who fought in the war and luckily did survive
But they served their country well
Lana came over for lunch. Just had a small battle with Dale - re getting into bed he wouldn't get into his pyjamas - standing up as usual…in the end we worked out that he wanted me to apply Arnica to his poor battered body.
So deep breaths all round
Monday had coffee with Judy Turner.
She really understands, as Pete her husband was so similar to Dale,
Plus we all knew one another years ago and remember how they used to be.
Heather and Carole, women I have met through the PSP society are comforting.
I don't know them very well but they have become friends. Nice ladies
Dale a bit better today except for eating his porridge lying down - first time I've seen him do that
Note to self - make sure he is sitting up when eating !!!
Tuesday 19th May
Worked for breakfast but when I went back to check on him, it seems even though sitting on the edge of the bed, he managed to slip off
The bedroom walls have scrapes and hole.
Getting the builder in soon to do some mending. I’m going to wait till Dale is in respite care, then plaster can dry, paint can dry and look just right
Part 11
Moving on to June
Time for Dale to go into respite care again
Mia and Cleo Diary 2015
Sunday
It is 3 years since Katie and Chris left our shores for an adventure overseas
Leaving their babies in my tender care
Last time it was September 2012, they were off to Spain for a wedding
This time a seminar in LA
Of course know the girls are older and they are more emotional about Mummy and Daddy going away
Day 1
First we got Katie to drop us off at Movenpick, then we strolled home dropping into Lush where the girls have picked out things to buy with their money
Home
Game of Minecraft
Dinner
Steak, roast potatoes Vege fritters from left over vege
Some TV
Bed
They were thrilled
Katie had left them letters under their pillows
Sensitive little souls
I have suggested that we start looking forward to them coming home,
rather than worrying about them leaving
All asleep
Interesting Mia's has been downloading a game onto my computer
It has been downloading since 2.45 almost done at 10.21 pm
Thank god I have unlimited data
Meanwhile
Dale is continuing to fall at his retreat
I got a call around 9pm
There was concern that he may have fractured his hip
There is some trauma in the shape of swelling and redness
But they called back about 9.45 and seems it just be bruising
When I pick him up tomorrow it seems that we will be going to the doctor
AGAIN
Yet another ACC claim
Anyway we shall worry about that in the morning
Hopefully it will be sunny and cheerful for the girls and Dale
Seems like a busy day set for tomorrow
Got the route to Cleo's school sussed
On Monday we didn't have to worry about Dale, so it just meant getting everyone awake, fed, watered dressed and out of the door
Cleo and I left, back home and then off to pick up Dale
He is looking a bit bewildered but pleased to be home
Bit boring for him, but at least then I could get home, lunch then ready to pick Cleo up at 3
Beautiful and sunny on the balcony
Dale got to sit outside
Played Stu's radio show and got some rays
Dinner was fish bites with mash, stir fired vege
Cleo up a bit too late so a bit tired and emotional
Mia was great with her
She sorted Cleo, I sorted Dale
He has a sore backside and is happier lying down
So after Mia went to bed I sat and watched my TV
Got to bed about 10.30
Very chilly outside but cosy in the apartment
July 14
Email to Sharon
It is easier to have people here, so Dale can be involved
He really doesn't go out much now
Bit hard for him
So Chez Nous, is a popular venue. Ha ha
Sunny, clear still but buggery cold
Dale really not very good, he finds it really hard to get around. And has so many falls that he is constantly bruised. Looks like a battered husband!
It's hard getting words out of him so there is a lot of guessing on my part and thumbs up and down from here
But we still have a lot of laughs
Could be worse
Could be raining
Part 12
July 17th
Gosh its been 2 months since I wrote Dear Diary,
So progress, (for the want of better word) luckily the falls lately are only bruising, his poor little tiny body is battered
Hard to sit, took him to Doctor, Xray, no fracture but just bad bruising, hard for him to sit
Got new rails for bathroom and showers.
His voice has disappeared and any words only come in a whisper. Really hard to understand
I just have to ask lots of the right questions and thumbs up and down
Trialed an iPad for communication...was quite good but waiting to see if we can get it funded, they’re expensive and I’m not sure if it is worth it
It seems that respite care this time, is double the price, I might hold back the number of times I send him there
$500 for the week, got him booked in for August and October booked in
Dale said something sad the other day, on his iPad, "I'm waiting for a cure"
Also lovely thing last night, I got home from dropping off the kids
He has put on all the lights and the heater. Quite a feat
Really sweet but fraught with problems
Anyone of those lights could have caused a fall but he did it Phew!!!
24.7.15 Email to Katie
I forgot to tell you
One day last week
I heard a crash
And raced I couldn't see him anywhere
Bathroom, bedroom
Then remembered new York days
And sure enough he had rolled off the side of the bed and was stuck between the bed and the window
Amongst the tissues no less
They might even had made the landing softer I wondered!!!
He has been quite good with the falls of late no real damage
Until tonight
Got another good bleeder on the head
Nurse Rachit or Fixit depending on how he feels!!! did the job
Luckily we put a coating on the lazy boy blood comes off easier
So that's life in Ascot, of a Friday
He's all tucked up in bed now a bit shattered
Monday 27th July
Last Friday, pride comes before a fall, so to speak
Was talking with Trish Everard at coffee, about how no blood for ages
So Dale did a wheelie and hit his head, lots of blood.
Little Steri strips worked well to keep scalp together but OK now
Speech therapist Ruthelle brought a new type talk device for him to trial
We’ll see!!!
31 July Email to Annie
With Dale you're right it is tough.
I have become the Mother, just want to pick him up and hug him but even though he is so thin
Still too heavy ha ha
You have to laugh,
Just had to take him to the Eye Clinic yesterday
He has to have an injection in his eye every couple of months, so off we went
At least we have the cripples sticker for the car, so we can park close by
Funny I didn't give a stuff about all the disabled parks, wide doorways etc that have been put into buildings over the years
But now that we need them, very grateful.
Funny how you change, when it suits ha ha
August Wed 4th
Last night another fall that caused damage, tooth thru the lip
I had my own Hannibal Lechter!
Of course lips bleed profusely, but also do heal quickly
Bit swollen today and probably sore
But he was looking broken today
It’s a rotten day.
Finally solved the music problem
I’ve set up Spotify on his iPad
He is listening to Chet Atkins
The talking machine didn’t work for Dale, he is really not capable of typing
Even though his vision is fine his brain doesn't work
So he cant make his fingers hit the keys so back to our original communication… rule by thumb!
Meanwhile I’m listening to Passion for Paris, dancing in the kitchen
Kate Robbins our OT lady is marvelous
She has been researching ways to relieve Dale’s right buttock problem
He is in pain
Physio coming to assess shortly
Thursday 6th August
What an awful day he had yesterday.
It was a bleak cold day and he was bleak and cold
At least 4 falls
So last night I gave him 1/2 sleeping tablet.
Hopefully a good nights sleep will help
A new walker coming today. Hopefully
No new walker, bugger, oh well maybe tomorrow
I have to say this week has been depressing for me ,
I feel a bit alone for some reason and I think its rubbing off on Dale -
He seems sad. Must be the mid winter blues
It was a nice day today perhaps a bit more sun would be welcome
Roll on Friday, My Mothers birthday Aug 7th
Maybe I’m taking too much “you have to think about you” advice on board
It’s time I got back to Pollyanna
It's time again for the Respite Care
I made a list
Dales things to take to His Retreat
Sweatshirt/jersey. 4 plus one on
T shirts 7
Undies 7
Socks 6 plus pair on
Red socks 2
Track pants 3 plus wearing 1
Pajama long 3
Toothbrush and charger
Shaver and charger
iPod charger
Radio
Hairbrush
Huffer
Drugs
Healing gel
Shower soap
Moisturizer
Tissues 3 pkts
I took him for a drive before "shutting him away"
He so loved the sea
Really noticing the grimace when he smiles.
Trying so hard to smile for me
August 17th Email to Mary H
Dropped him off today
With screeds of notes
Spotify on his iPad for music
The very simple radio
Meds all in a little 7 day pack
Enough clothes for a week
Meanwhile I'm watching cooking TV
Wine
Terrine, French bread
And currently eating chocolate.
Lunch out with Cath and JT tomorrow
Builder coming to Fix holes in wall tomorrow
All go
Xxx
August 17th Email to Craig
Today I dropped Dale off at his Butlin Holiday Camp !!!
He is there till next Monday
Respite care
Not sure if respite for Dale from me?
Or maybe just respite for me?
Anyway if you have some time I'm sure he would like a visit
He is at St Andrews Village
207 Riddell Rd
Glendowie
Quite easy to find
Don't bother taking anything he really isn't interested
I've tried food, fruit
Waste of time
Just a friendly face is all that he needs
Xxx
Part 13
Gosh now it’s Aug 25th
Dale has been in respite care
Was a nice break for me
Picked him up. He’s glad to be home
Physio came today to check on his buttocks
So really possible cortisone injections and keep on with the pills and ointment
Anitflamme and the odd Voltaire
While Dale was away Frank the builder has built a sturdy rail for stability inn the bathroom
It’s great… hopefully this will help him
Sept 1st
Came to a conclusion I now belong to a club The Wives of the Dead and Dying.
Quite a large group really
Had coffee with John Hughes and Annie Walden (dying husband)
Tomorrow lunch with Heather and Carole (Dead)
Got to laugh really
I think the sad thing that happens to a carer, is first you have lost your spouse plus you’ve also lost your life together
Sort of putting it on hold really
That's not a complaint but a reality
For better or worse, in sickness and in health.
That's what you sign up for
Visited Wong last Friday
Definitely PSP diagnosis
His eyes are starting to freeze
It is a major symptom, it's the muscles
On a positive note his eyesight is good
5th Sep
Email to Mary H
Friday was really exciting!!
In the morning a meeting held by The Parkinson's society
All about falls
Of course it works for people that have common sense which my pudding (Dale) has lost
Anyway I've got the method, be interesting to see if it will work
Monday night 7th September
Dale had a fall
Appeared to be OK, reopened a graze. Dressed that
Shoulder sore but could move it
Painkillers and off to bed
Tuesday Morning
Shoulder swollen. When Tivae his shower lady was here, he collapsed
Got to use the St Johns button
Off to hospital, Broken shoulder.
The bed lowered to the floor
He’d had a fall. My poor darling he is confused, it s his good arm
How’s he going to use his walker?
I’m worried about him
18 September Email to Stu and Yvonne
Hi Guys
Lovely to hear from you
Nothing much changed here
We had a family meeting yesterday to discuss his goals for coming home
The first which is that he can get around with one person instead of 2.
It is a very painful injury and I feel so sorry for him
So hard of him to communicate
They have him in a room by himself by reception, so they can keep an eye on him
The main problem is his impulsiveness, which is cause for concern
But as someone said the other day
What's changed!!!
He has manged to charm the nurse and they are lovely to him
So, upshot is hopefully he will be in there, till the bone heals
Terry said, they took him up to X-ray yesterday so we may get some more news today
Meanwhile between us we are costing the taxpayer a fortune
He is on ACC and I have full run of the Auckland Transport,
Busing everywhere
Thanks God for my Kindle and Spotify on my phone
Have music and book, will travel
Tuesday, 2 weeks on… Sept 22
No real improvement, I think his mental state is getting worse.
Confused, Panicky, still needing 2 people to get him up and to the toilet
Saturday
Weather beautiful today, thought I would set Dale up with the Woodstock Movie today
It’s hard to know if he is really interested
Jo Physio and Megan OT, love him and he is really trying hard.
He tends to do the “poor me, poor me", to me, I sometimes think he is punishing me.
Showing no interest in things, I am doing for him
Just don't know whats going on in head
I could almost, always read him in the past but it is tougher now
Don't know if he’s really pleased to see me or not
He’s stuck with me though!
Cycling with no pain
Had a lovely picnic at Silo Park with the Noble Clan. Great way to send the day
Feeling slightly guilty, decided not to visit the hospital today
Came home after lunch, made decision.
Will interested to see if he has noticed though
Monday
Food was interesting though, particularly if you like orange
Just a little update on Dale
6 weeks today, we pushed the St Johns button and they came in and picked him up literally from the floor... Then delivered him to the big house on the hill
Diagnosis... Broken Shoulder
Of course with his impulsive (are we surprised)...behavior
Healing of the poor old shoulder has not been easy
Can't keep a good Dale down. So to speak
He is still in the old peoples ward, opposite the nurses station
Complete with a watcher and over the 6 weeks, a variety of bed mates
At the moment it appears...not poor demented souls as we have had in the past
It's been an interesting time
So we have had some home stay days, out of the asylum
However, unfortunately it seems that at the moment, I won't be able to look after him at home
He is needing 24/7 supervision
So currently I am searching for somewhere nice for him to recuperate
After all, he can't stay up in the White House on the Hill forever
Convenient as it maybe
I will let you know where he will be
When we know
Who would have thought, he would have been in this situation
Can't walk, can't talk, can't play the guitar
But as luck would have it, he did spend many years doing all of these things
Maybe he just used up all of his skills early
Ha ha
Love to all
Xxx
22nd Oct 2015
email to Ricki King
Yes now we are going through the process of getting Dale assessed and see if he will accepted
at St Andrews
I told him today that we were looking
He’s being good about it
One minute he says “Positive” then told Katie, he wanted to go home
So it’s going to be interesting
And of course the cost
Wow…I might end up living under the Grafton Bridge ha ha
Lovely message to Grandad from youngest Granddaughter Cleo
Part 14
Dale's New Home
Dear diary Nov 5th 2015
The whole month of October has passed and yesterday Nov 4th 2015
35 years since my darling Father died, I took Dale into his new permanent home
St Andrews on the Water
After 8 weeks in Auckland Public. They can no longer do anything for him
It has become obvious that I couldn't look after him
Group email
So it was Bye Bye to Marino Ward at Auckland Public after 8 weeks living of the Taxpayer…then off to Hector House at St Andrews Village.
Dales new home
Arrived just in time for lunch
All the others residents photos, are black and white shots, all looking very old! Can't have that
Have to get some more bits and pieces to brighten it up
And then, Voila
Over he went
All in the first 6 hours
Stitches.
He’s not trustworthy,
Impulsive and Quick
Patient ok,
Staff probably more shaken than him,
After all he’s used to it
Anyway so far, so good today
Going out, Nodding off in the sun
A reinforced Beanie
As the days rushed on Christmas was coming...got some decorations for his room
One of the sad things for us, as a family,
as grateful as we were for the excellent care. Dale just didn't belong with all of these old white haired people.
It just seemed wrong.
At 71, too young
Managed to get a snap of the staff and some of the residents
The visits to the eye specialist, continued I was so pleased that they still were concerned and prepared to work on his Macular thickening.PSP does affect the eyes, particularly with the muscles of the eye. It becomes difficult to look up or down. If he lost his eyesight as well. Such a tragedy
Wasn't pleasant though, the injection straight into the eye
Because of his impulsiveness, e.g. getting out of bed when no-one was around
Hence more falls...they had him sitting by the nurses station during the day.
Hi Everyone
It’s been a big year
50 years married
I’ve hit my 3 score Years and 10
We moved back to the old hood. Remuera
Great view.
Then, it did turn a bit to custard
Dale fell and broke his shoulder
Unfortunately after 9 weeks in hospital, it became very obvious that I wasn’t going to be able to look after him
So we dispatched him off to St Andrews.
It was a hard decision, but we made a good choice
Lovely surroundings and a very caring staff
Miss not having him around... under my feet (almost literally)
But it’s a pleasant drive to Glendowie…I now know it well, on my daily visits
So Merry Christmas to one and all
And looking forward to 2016
At our Pre Xmas Xmas lunch
Part 15
Our Last Christmas
Christmas Day
It was sunny and an excellent day to bring Dale out of the Home, for Christmas Lunch
Dale as usual getting a few extra zzzz's
Heinzie wheeling Dale around in the Lazy Boy Wheelie Chair
Just making sure Dale got all the sun he could
I even got Dale to go to Bingo
Not really his cup of tea
I was all set to take Dale down to play again
He was not keen
Well... how to get out of that? you may ask
Break your wrist
And so the saga continues
I arrived late today...after dinner, so that I could watch The Chase with Dale on TV1plus
Angie, charge nurse, came and mentioned that he had had a fall late last night
Hurt his arm
In the morning, it only showed as bruising, but looking worse as the day progressed
So just after I arrived...
So did the Portable X-ray
Yes, broken wrist
Back to Auckland Hospital, The Old Hood
So, then, we waited for the Hercules Supa Taxi to come and take both of us, straight to the ERVery familiar feel about this
Leaving my car behind
Personally a wine would have been nice
But that wasn't on offer, unfortunately
They had rung ahead and because we were already "X-rayed"
Straight through
"Triaged"
of course then waiting...waiting...waiting
Meanwhile, as luck will have it
Have kindle, will travel
So things for me to do
My friend is now wired up, with a big cuff on the upper arm
Looking at the X-rays, on a computer screen
Getting ready to pull the arm, get the bones together and then set it
Mmmm, glad its not me
Numbing agent gone in and now we are waiting
Patient quite calm
Arm up, so swelling goes down a little
It's 22.15
the staff are pulling it into place
Couple of pulls and twists
All done
Plaster going on now
My Brave Friend
Working quickly
They are doing a great job
Doing a nice tidy job
Time: 22.38 pm
Waiting for second X-ray.
Dr Bill not overly thrilled
Not as perfect as he would have liked
Mind you...better than the shoulder
Which of course still hasn't mended
Main worry now, will he knock himself out
With this very heavy arm
We shall have to wait and see
Hope he doesn't knock me out
Ha ha
Then Taxi!
"Home James
(Actually Raj was the Taxi Driver's name)
Don't spare the horses"
Very nice man. Very helpful
He's a DJ on the Indian station
Does the 7 - 8 pm shift 5 days a week
He plays Bollywood Music and speaks
"Hinglish" on air
He did a demonstration for us to keep Dales mind off his Bloody injuries
Very excitable and funny.
Wearily, I left my damaged man, back at St Andrews, with ladies fussing over him
Popped into the little red car
It may be 12.50
But I did pour myself a cleansing wine
Glad that's over
X
Tuesday
Big day at St Andys. I arrived in time for lunch to see the dining room deserted.
Turns out House 1 and House 3 were having a combined BBQ.
Just up Dales alley!
Not!
Double the amount of people.Candles and some flowers on the table. Pretty plastic plates
Party time.
The Menu
Lamb sausage and onions in brown bread. Tomato sauce. Looked quite tasty
To continue with the party theme, Ginger Beer or Sprite.
Then blueberry pudding and custard.
So many old ladies with grey hair, the men sprinkled amongst them.
I got there in time to help Dale
A young woman was there helping her father and she also helped Dales friend Jack.
Dear Jack, who has Alzheimer s, forgets to eat, so someone needs to put food on his fork for him.
Sitting next to Jack was a dear old soul. She's Russian.
Talking away to poor old Jack in Russian. That confused him. She was so animated.
Hands everywhere.
Then it was all over, everybody out!
Our next excitement for the day, our trip to Greenlane to check on the arm
There was a mix up with the cripples taxi.
As luck would have it. I am quite a good patient transfer person.
So off we went
Meanwhile he has developed a chest infection. So he's not a very happy Chappy.
But he was amused, as was I last night. One of the fellow residents put on quite a show. She was shouting and laughing very loudly at dinner. Apparently this is common.
First time for me though. The comment that I loved the best, (in amongst, nursery rhymes and threatening to murder a fly )was this...
Her words... "Ha ha imagine if my teeth flew out of my mouth and bit you. Nobody would know who did it."
Ha ha. She laughed uproariously.
As Maurice one of Dales dining companions asked, is this tonight's entertainment?
Maurice is a bit bereft of humour and that was not a facetious remark, but I have to say it was great entertainment for Dale and I.
Life at St Andys continues
Xxx
23.01.16
I went in late afternoon
The chest infection had worsened
The chest infection is of course, pneumonia
So it was off to the hospital we went
Me in my little red car
Dale in the ambulance
I was obviously quite prompt and was there at least 20 mins before the ambulance
Actually empty, don't see that often
Finally though to the admitting wardPoor Dale was quite distressed by the time he was transferred
From the ambulance stretcher to the hospital bed
Or at least the history of Dale and I suspect many other people
Onto the oxygen and then like Keef of Rolling Stones fame... heaps of morphine straight
Into the vein
Meanwhile I am hanging out for a wine
So they brought the X-ray to him
Mountain to Mohammed
He is very confused and panicky
And trying to get him to keep still, took a lot of skill
The radiographer wanted a perfect picture
The doctor didn't care, he just wanted a picture
Anyway finally it was done
After the nurse insisted
All his vitals are up
BP at one stage 162/80
For me, wouldn't be a problem but for him unusual
Dropping now 142/77
Interesting like a hard plastic condom with a tube
No pressure now for the toilet
As I was writing this, I became aware that this was really serious
One lung completely infected, quite a rapid decline
The doctor was not making good noises, so time to get the family up..
Katie arrived first with a cheeky Rose for me and some dinner
After all it was Friday night
Dale getting all of the drugs
Didn't eat the dinner but drank some wine
Soon we were all here and the news was not getting better
So there we were, hovering around him like angels
That probably annoyed him
But he's a fighter if nothing else
Can't keep a good man down
Started to play music on my Spotify
Luckily I thought ahead and got Katie to bring in a charger for my phone
So we have power galore
It was a very tense time.
Luckily, a new young doctor came on about midnight
And after discussions about Dales general lung health, which hasn't been always fabulous,
He thought a nebuliser might help
Round of applause from other members of the family, that share the same Wrightson bung lung gene
It really seemed to settle him
It was decided that we could leave him and then we could all get some sleep
They open the gates and you don't have to pay for your parking
So that was exciting
So Dan, Kate and I are here this morning
He is still not exactly scintillating company
But he is with us and we get a smile or 3
Luckily we have a wonderful view, so sitting here all day, won't be too taxing
Over and out
Visitors came and went, in our usual fashion, it was Party Central, seemed fitting.
Thoughts from the night watchman Jan 23rd 2016 from My Lazy Boy Chair
with my Dale, lying on a lazy boy chair. Kindle in hand. Music playing on my phone.
Unfortunately this time, we are not traveling together. I am watching my husband sleep.
He is dying and there's nothing I can about it
I have loved him since May 1963.
It has been a Wonderful Roller Coaster of a life.
Between us we have met and kept lifelong friends and family, who have shared so many superb moments with us.
Then the icing on the cake, Daniel, Katie, Helen and Chris and 4 beautiful grandchildren. Sophia, Joseph, Mia and Cleo
How lucky are we.?"
So as our life together is ending. I can say, I have no regrets. Except I will miss him.
And it would have been wonderful if this ride hadn't ended so soon
Dale finally left us at around 4.00 am on Tuesday January 26th 2016
The family all came in, Katie brought in a Pareu to drape over him
As a thoroughly Modern Family, we got on our phones at 4.57am and let the world know that Dale had finally left us.
My final time with him, it was hard to leave him
Ça va
Part 15
Living With and Without Dale
If I could have been brave enough this is the speech I should have read at Dale's Farewell
After living and working with the ultimate Editor, I will try and be brief
We met and married as Babies but with the advent of that new fanged drug called the Birth Control pill,this gave us the opportunity to grow up together.
We both had jobs that we loved, Unilever for me, J Inglis Wright for Dale...and there we met some many wonderful people, who are still part of our lives. Over 50 years of friendship
Also the chance to buy a house, a brand new car The Super Imp...then saving to go on our OE. catching the Northern Star to Southhampton
Rented the house, sold the car and off we went.
I make this sound so easy which it was for me, but it was all about Dales determination and hard work to make this happen.
Band, Share market, doing up old cars and on selling, and of course working at his day job!
Made some lifelong friends on the boat Ricki and Glenys
Arrived in Thames Ditton, where Phil and Chris welcomed us and put up with us, poor chris pregnant and 2 brash kiwis move in, till we found jobs and somewhere to live
Once again through a workmate of mine from Petone
We became part of a real fun group of Kiwis and Aussies
Party, party, party
We all did our "Camping around Europe" Trip that summer arranging to meet in Munich,
Spent the best week there
A bit tired, off, we all departed
Winding our way through the European roads,which Dale loved and drove like a bat out of hell
After several stops...in Venice we met camped next to an American couple Roy and Jeanne
We all went down to Rome together and they invited us to stay with them when we finally reached Paris.
that was superb , bit cold by then for camping
What were we thinking...as we took off from our flat in Twickenham. The car (Dales first Mini) was so full we almost rolled it on the first roundabout.
Some adjustments were made and off we went to Dover.
First stop...Koblenz, through Belgium, I was allowed to buy some Pommes Frites, en route and we only stopped long enough to get a couple of photos
Exhausted we put up the tent, bit difficult, I was in tears and just wanted to go back to London.
The to our delight, a German couple who obviously felt sorry for invited us over for a wee "dram" of schnapps
This lifted our spirits and, we slept like babies.
The next day,
The sun shone, we rearranged the car, and happy as sandboys drove off to start our adventure
On our return to New Zealand, new jobs, back to our old friends.
So pleased to see these people we had known and loved since we were teenagers.
So .Time for a family
In came Daniel and as we were no longer the children on the block and grown up enough to fit in with our neighbours
Those neighbours, still part of our lives
It was Katie's turn to arrive
Our family was sealed and it has been the best thing that happened to us
Our friends have made us.
Always such a joy to get together at parties
Holidays, to remember
Taking everything but the kitchen sink
One holiday we towed the jet boat,
Filled up with essential items
TV, beer fridge
Nothing was ever a problem that couldn't be solved,for Dale
As the business grew more successful, it was time for the move to Auckland, sold our first home in Churton Park.
11 years of happiness
Arney Cres, a home to die for
It grew like Topsy and
the Party continued
Of course during this time the friend list grew
Exploded you could say
Getting people together was something we loved to do
Just throw in wine, food and Music always Music
Business flourished, once again, work mates and clients became great friends
In 1984
Dale turned 40 and decided the Corporate life , wasn't for him so he left and we started to work together, to save money on staff and premises. Mmmm
It was an interesting beginning, office at home
Grandma living with us, kids, dog and cat
It was an interesting concept
After a few months it became obvious that we had to become more professional and some office space became available
As the kids got older, Dale got them involved in our business
Both teenagers, learning the ropes in production and getting involved in first the advertising world and then the Music World
Here we are 30 years, after, a real roller coaster ride
They are running a very successful business
1991, Dale fulfilled a lifelong Dream
Bought a 45ft Cavalier
The love of his life, after Me and the kids,
Well some time I wonder if maybe, Sailing Music, then Us
Which ever way we have been and also be such a close unit
We travelled all over the world, frequently taking the kids with us, wanting them to experience as much as possible.
A few years ago we were put out to pasture
We spent some quality time together, on the boat, traveling all around the world
Fate dealt Dale a cruel blow
Firstly diagnosed as dementia, then finally settling on Progressive Supranuclear Palsy
At first I was pleased it wasn't dementia, but as the condition progressed we began to realise how cruel it is.
He became lethargic, it was as if a whole layer had just been wiped off the top.
As Forrest Gump so aptly said ,"Me and Jenny goes together like carrots and peas"
That was Dale and I. We were never bored with one another
But it became harder to converse. Thank God I do burble on too much
So I just talked for both of us
Our family and dear friends watched Dale disappear.
Just left at the end with this gentle lovely shell
All the falls, the holes in the walls, the broken things around the house
The poor broken body
The trips to the hospital
Wonderful staff who really cared for him
After his trip to hospital with the broken shoulder, it became so obvious
That I could no longer look after him
So off St Andy's by the sea he went
The staff were fabulous with him
It wasn't all doom and gloom though,
Thank God for a good sense of humour.
The final fall, knocked him for a six and pneumonia developed
So at 4am January 26th
Just the two of us there
My Dale quietly slipped away
We were so lucky to have 3 days to sit with him and love him
The hospital room, was how we lived our life together
Party Central
Filled with dear friends and family
Dale, I shall miss you
What a wonderful life, we were lucky enough to share
Of course not without it's ups and downs
Like a roller coaster ride
Not a lot of people get that opportunity
So very, very cathartic for you Gillian. It was a real pleasure to know him and thank you for sharing his story with me and others........
ReplyDeleteI just re looked at this Gilly. Amazing life he had and that he was able to share with you and you with he.............
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