Who You Gonna Call?

If you ever lost your memory, who would you call?

One thing that Mum noticed early on about Dad, was how he wanted her to stay close by, especially when they were out.  That was a little unusual.  Dad was a walker, a wanderer.  Find him a market, a second hand shop, a place he's never been before and he'd be lost in discovery. 

It took a while, but his confidence with things like being out shopping on his own started to decline.  Consequently, his dependence on mum increased.

I’m not talking being alone in a major city here.  I mean being unable to find his way back to the car in their little country town.

So, Mum ended up having to be very close by.  In fact as his Alzheimer’s progressed, Dad wanted to have her front and center almost constantly.  When he couldn’t get that he’d have one reaction.  He’d panic.

I remember visiting town one day.  Mum and Dad pulled up at the grocery store.  She pointed us out to him on the other side of the road.  We waved to each other and he started to head in our direction.  Mum took our presence as an opportunity to slip off to the shop alone as Dad was wandering over.  He hadn’t seen her go the other way and when he realized he looked round searching. He looked as though he had no idea what to do.  His lifeline had done a runner.  

He spun round again, saw us as if for the first time that day, and came racing over as fast as his old legs and walking stick would let him, in a real panic.  ‘Have you seen my wife?’

Yes Dad.  She’s gone into the shop.

Has she?  You’re sure about that?

Yes Dad.  You want to come with me.  I’m going to buy a coffee.  I’ll shout.

What about Pat.  What about my wife?

She’ll find us Dad.  And if she takes too long, we’ll just have another coffee – and you can buy that one.

Can I now?

Yep.

I do wonder what must have happened the first time he got ‘lost'. 

Imagine being lost in a place you’ve always lived. Lost on the street you’ve just walked down.  Looking at people you've known for years and thinking they're strangers.

Imagine the panic.  The confusion.

Imagine having to walk up to people, who you may know, and saying, ‘How do I get home?’

What must people think when you do that? 

That’s one good thing about being part of a small town, they know who to call.

Expert: Box Ticked...But You've Got It Wrong

Dad was assessed, by the experts, as needing high care -  what do you do when you discover that assessment is wrong?

I can’t remember what the exact wording was in the report, but the result was we were sent to look at available facilities that offered care for Dad’s assessed level of need.

We were horrified. 

These places were for people in walkers and wheel chairs, those who couldn’t feed or toilet themselves.  Those who spent their days on heavy medication so they’re easier for staff to handle. 

Dad may have a few memory issues, and he may occasionally get angry and not remember it 5 minutes later – I found out down the track that his aggressive outbursts were largely why he was assessed as high needs –  but he was nowhere near needing lock down 24/7. 

He still loved to go outside and potter or sit.  He still fed, clothed and toileted himself. 

We knew that he would hate being locked in - if the experts were looking for a reason to make him angry, that would do it!  We knew he would know if he was walking round in circles in a tiny fenced in excuse for a garden, with no view of an ocean, and no vege patch, and no verandah to enjoy the end of day sunshine.

Quite frankly, we knew the recommended facilities would drive him crazy.  We also knew the only way they would ‘handle’ him was with heavy medication – because that’s what you do with violent types (my bias).  We knew they'd' got the assessment wrong.

It’s funny, but I always got the feeling that Dad got angry because he was frustrated.  And he was frustrated when he couldn’t understand what was going on around him or when he couldn’t communicate two things. One, what he wanted to say about what was going on around him and Two, what he wanted to say about what was happening inside of him. In both cases, he’d get so agitated, he just couldn’t get the words to come out – so he got mad and lashed out.   

It astounds me that the ‘experts’ (or rather one part time, not available till after my holidays expert) in Northland not only could not be, but were not,  interested in acknowledging this.  It seemed to me they just wanted to lock Mr Angry Dad away and dose him up because the boxes they had ticked on their Alzheimers symptoms list said so.

There was no doubt in our minds the experts in The Machine had ticked the wrong boxes. In short they had got their assessment wrong, so we set about changing it and looking for something more appropriate to what we knew his needs were.

Brush my boat....I'm going to church.

Dad started mixing his words - brush my boat, where's my dragon....It sounds humourous, and in fact taken on its own, it is humorous.  But there were times when it's just sad.

Dad was struggling with what was happening to him.

He’d often say ‘I think I’m having problems with my memory’. I’d just say, ‘Yes you are Dad, but that’s cos you’re old.  It’s an aged person’s problem.’  I didn’t see the point in telling him he had Alzheimers.  Maybe I was wrong, but his diagnosis did not result in reams of information being laid at our doorstep about what to do and how to go about it.   

Some days you could see his frustration with his condition.  Imagine knowing that you know something, but you can’t for the life of you remember it…..

One day he called me into the kitchen, pointed at the gas hob and said ‘What is this thing for?’

It’s for cooking dad. You cook food on it. 

That’s right.  And what’s it called again.

 It’s a gas hob Dad.

That’s right…

I can’t begin to imagine what it must be like to find your understanding slipping away like that.  To lose your ability to carry out simple, basic activities that you’ve done for years because the knowledge is there in the haze of your mind, you know it is, or it should be, but you just can’t grasp it and hold to the forefront of your thinking. 

Before I left for Saudi, Dad was replacing intended words with others.  For example,’ I have to go brush my boat’. (hair).  It is very easy to dismiss him as being completely loopy when this happens and, when you can’t get the right words from him, or figure them out (Brush your boat Hiwi? What do you mean, I don’t know what mean by that?) and walking away.

I’m glad our family has the ability to see humour in this Dad's situation. 

‘Why Dad are you going fishing?  I thought you were going to church’. 

‘Oh, is someone going fishing?’ 

‘No Dad, you’re going to church, but you better go brush your hair.’

‘Yes, that’s what I was doing.  I’d like some fish though.’

The first time I saw him muddle his words so badly the sentence made no sense at all, he got frustrated.  No matter how he tried, he couldn’t communicate his intent.  I’m not sure if his frustration was because we could not understand him, or because he figured out he was using the wrong words.

Having difficulty following a conversation when people spoke too fast kicked in some time ago. 

We got an email from my sister recently and she said that finally the nursing staff have realised that he needs time to compute what is being said. 

If you don’t mind silence while computation is occurring and if you don’t mind repeating the information slowly in simple bite size pieces, you will get an answer eventually.

Health care deficiencies - the last thing we need.

Dad used to walk, almost daily, it kept him healthy and fit.

The latter few years he'd take a walking stick with him.  He had a few - anything from home made tea tree or a bamboo stick with rubber stuck on the end for the handle through to well crafted, purchased varieties.



Mum, Dad, moko's and one of the walking sticks.



He and Mum lived in a small northland town and he would take the dog for walks down to the bridge and back.  It’s actually a wonder neither of them got run over. The house is by a main road north, so there can often be a bit of traffic and it moves very fast, especially when them city folk are heading to their northland beach houses over weekends and holidays.

I'm fairly certain he spent a bit of time day dreaming on those walks.  Reminiscing about the good old days of his boyhood and his own Dad - he always spoke highly of his father.  Thinking about ways he could help his whanau, his iwi, his fellow man.  That and trying to keep the dog on track.  There were times that both of them, Dad and the dog, would meander all over the road.

My sister bought him a reflective jacket one day for safety.  I don’t think he wore it much.  

Being part of a small community had its benefits.  Local people knew who Dad was.  They’d toot as they passed.  Some might stop to talk.  And if people were concerned that he may have gone too far, they'd give him a ride home, or ring Mum's workplace to let some one know.

As his Alzheimer’s progressed, the amount of time he spent walking down the road decreased, though that took a while.  Walking down the highway was something he had done for a number of years.  I’d say walking was wired into his programming and it probably contributed to his good physical condition.   



They say that ingrained patterns tend to stick in the memory the longest.  So, for quite some time post diagnosis, he still walked, sometimes late at night.  And Mum would worry where he was.  On more than one occasion someone in the whanau would hop in the car and go find him, just to make sure he was OK.

I’m not sure at what point he stopped walking down the road, but up until his physical health took a turn for the worse a few weeks ago he still liked to be moving and active.  Or at least, he liked the idea of being moving and active. 



We had difficulty finding the right place for Dad when the conclusion was reached that Mum could not care for him at home anymore. 

Of course this wasn’t helped by the fact that his assessment was wrong.  An assessment made by a relieving doctor who didn’t come and visit Dad, he merely read a few notes and, when we had questions about his assessment, was unavailable to review it until the New Year.



We were being introduced to the machine that is our health care for the elderly. 

And we were finding its deficiencies.

When your father is assessed with Alzheimers, and your mother is suffering the stress of that diagnosis, and the emotional turmoil of having to admit your husband for care, the last thing you need is machinery deficiencies.

Apple Pie, Globalisation and Hind Sight.

We love mum. 
Mum is a real special lady.
She makes the best apple pie in the world....

Dad's Alzheimers has tested her. 
We probably don't really know how much.

When it was first suggested that Dad might be in the early stages of Alzheimers, I don't think any of us actually realised the impact this disease would have on him.
 
When he eventually was diagnosed, I'm not sure that mum believed he had Alzheimers.  And I'm fairly certain that none of us, mum in particular, realised what an impact this would have on her.

In the interval between resigning from his job and just prior to his diagnosis, Mum did mention she had noticed a couple of changes in his behaviour.  One of them, she said, was he had started to lack confidence when meeting people.  That was unusual. Dad used to love meeting people.  He was a people person.

One of his more common topics at functions, he often got requests to speak, was the importance of respecting and embracing other cultures and what they had to offer our own country and maori in particular.  He and mum were involved in organisations, and in fact set up one that still operates today, that specialised in inter-cultural relations. 

If we'd been looking for the onset of Alzheimers as Dad got older, maybe we'd have known that reptition of a topics is a sign.  Along with confusion of concepts.  But I for one presumed Dad would grow old with grace, with just the typical golden years issues, so wasn't keeping an eye out.

In the years preceding his diagnosis, and it was a few years, it was a bit of humour at family functions to wonder what speech Dad would make, because being head of the whanau and a man with mana, it was expected he would make speeches. 

Would he talk about embracing other cultures (he often did), would he quote his favourite passages from the bible, would he talk about the 'global family'.  We found this humorous because he was speaking at family birthdays or weddings.  Not really the right sceme for a topic like globalisation.  And once he started talking, what would he say?  And when would he stop? He would often repeat himself and his repetition took him round and round.

You see, he was already exhibiting symptoms, we just didn't register it as serious.  He was getting on in years after all.
It's only now, in hindsight.....

How To Raise Baby Dragons

In 2005 we decided to leave Melbourne, Australia and move home.  We'd been away for seven years.

Just prior to our return, Dad had stood down from his role as Chairman on a local baord and was 'retired'.  He was keeping himself busy with little projects - going to the farm to pick grapes, building this and that around the house, reading and writing. 

At some point after our return home, we were told about the little things which contributed to Dads standing down.  He would go off on tangents in discussions, his memory wasn't the best....you know little things that are usually attributed to aging, but which people identified as 'affecting work performance'.

I think Dad was early to mid 70's and still working.  It seemed reasonable that he would be showing signs of age.  A little memory fade here and there, nothing major.  At least that's what it looked like to us.  Physically he was still in very good condition.

Soon after we had settled  back home, Dad started painting a dragon on the wall in the hallway.  It was a bit of a joke with the whanau.  Mum, who I have decided is a saint, just let him go for it.

You have to realise that Dad, with all his building projects, is not a builder, nor would I qualify him as an artist.  Glenn says he learnt alot from Dad about 'giving things a go'.  In his retirement, he was doing just that.  Whatever came to his mind he would give a go.  Whatever came to his mind.....

Dragons were his latest focus.  We probably should have heard alarm bells ringing when he started asking where he could find a book on how to raise baby dragons.

Dad

My Dad has Alzheimers.  This is his story.

I haven't really thought how I will tell this story.  One morning I woke up and decided I would do a blog about my Dad and this disease that afflicts him. 

I'm aware he's not alone as a victim.  I know for certain I'm not alone as a suffering family member, I have 3 brothers and 2 sisters, that's just the tip of the whanau list, and they live back home.  Together we've been watching this man slide from the Dad we knew to.....Dad with Alzheimers.

This Bible reading is Dad's favourite.  He'd bring it up every time he had the chance.
When his Alzheimers was setting in, he'd bring it up a lot.  The whanau used to have a bit of a chuckle, because he'd inevitably get it muddled.  It's nice to be able to chuckle now and then.

For everything there is a season, and a time for every matter under heaven:

A time to be born, and a time to die;

A time to plant, and a time to pluck up what is planted;

A time to kill, and a time to heal;

A time to break down, and a time to build up;

A time to weep, and a time to laugh;

A time to mourn, and a time to dance;

A time to cast away stones, and a time to gather stones together;

A time to embrace, and a time to refrain from embracing;

A time to seek, and a time to lose;

A time to keep, and a time to cast away;

A time to rend, and a time to sew;

A time to keep silence, and a time to speak;

A time to love, and a time to hate;

A time for war, and a time for peace.

What gain has the worker from his toil? I have seen the business that God has given to the sons of men to be busy with. He has made everything beautiful in its time; also he has put eternity into man's mind, yet so that he cannot find out what God has done from the beginning to the end.

How does one describe this time that Dad and all the whanau are going through now?