Favourite Verses

I was reminded, on my trip home recently, of another of Dad's favourite verses.

For I am persuaded that neither life nor death, nor angels nor principalities nor powers, nor things present nor things to come, nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord. (Romans 8:38-39)

The family have put together a couple of albums and booklets for Dad (our niece even made a photo album for a Christmas present) and this verse was in one of them.  He can read these albums at his leisure, or we get them out when we visit - to attempt to keep him remembering his family.

To date the books have managed to stay in Dad's dresser where he can easily access them but out of view of others.

The quirky thing about Alzheimers homes is that the residents will wander.  They'll sleep on each others beds and help themselves to each others clothes, shoes and other belongings. 

Dad is no exception to this behaviour.  In fact, because he is a bit of a magpie, I'm guessing he's one of the worst offenders.  It was not unusual, when visiting, to have to escort him out of someone else's room or find him dressed in clothes that weren't his.

Some facilities try to prevent this communal sharing of private property by locking all the bedroom doors during the day.  Others accept that this behaviour is normal and request, quite sensibly, that all belongings be clearly labelled.  Then when found elsewhere they can be returned to the correct room, eventually.

We decided to go for the communal sharing mind set.  There is something not nice about locking old confused people out of their rooms during the day.  Does it really matter if they don't quite make it to the right room now and then, or if they help themselves to something that takes their fancy. 

Considering what this disease does to them, why not let what belongs to someone else bring them a little joy for a little while.

One can only hope that, should they hoist Dad's books, they'll like his favourite songs and verses as much as he did.



Visiting Dad

The family visits Dad regularly.

Mum drives down from up North to see him.  She has taken Dad out of his current care facility a few times to see how he reacted and also to see how she coped. 

She has been thinking of taking Dad home.  She believes he should be seeing out his days at home and I tend to agree.  There is something about dying at home that is more comforting than passing on in unfamilar territory.  Especially if you're elderly.  I mean, what if that big Marae in the Sky is harder to find if you're not on home turf when you check out? 

But the fact is, and Mum has also admitted this realisation, she will need a lot more support to be able to care for Dad at home.  Where does one find quality, highly trained, 24 hour in home care in Kaeo?  And someone will have to build a fence - the Northland property is not conducive to keeping Dad out of harms way and within sight should he actually manage to shuffle down the driveway.

Rather than give up on the idea of taking Dad home, Mum has been thinking how she can make this plan happen.  I'm sure if it's meant to be, the universe will provide.

My sisters have also taken Dad on a few outings (watching the kids play sport, that kind of thing) to give him a bit more stimulation and a change of scenery.  I gather, from e-mailed reports, that he is relatively happy to be taken along but he does get tired easily.

We, sitting here in the desert, don't imagine for one minute that looking after Dad is a piece of cake for mum or my sisters.  It would be like having another very dependent child along for the ride.
 
My sister's partner is into alternative health and visits Dad a couple of times a week to give him massage and other treatment.  Results are positive, though the medical knowledgable think all or any improvements are due to the drugs.  We, being holistic health knowledgable, appreciate his efforts and roll our eyeballs over the medical knowledgable response.  There would be less contortions of the eyes if the medical machine would make the effort to look into alternative health and see it's advantages, particularly in care of the elderly and Alzheimers.

Our son visits his grandfather every couple of weeks.  He sometimes takes his little boy along for the trip.  We are glad he makes the effort, especially as we can't be there, and he reports his visits to us when we Skype.   I don't know if he considers these visits are an effort - he's always had a soft spot for his Poppa.

I guess what I'm trying to say is I'm glad Dad isn't one of those men who appears family-less.  You know, one of those old folks in old folks homes who don't get visitors.  It would be easy for the family to say 'I have a life and it's too busy to include you right now, Dad'.   Especially as there are times when Dad is very non-compos mentis.

Visiting Dad takes effort.  It takes time.  This isn't a drop in for five minutes on a whim for a quick cuppa kind of thing.  This is committment.  Regular, ongoing committment.  And there is no way of knowing how long the family has to keep visiting Dad.  He is looking rather frail right now, but that doesn't mean he's about to clock out any time soon. 

I am reassured knowing that, regardless of how much longer he may be on this earth, and regardless of how aware he may or may not be, the family will keep visiting Dad.

How does one help, so far away?

Dad

I was lying in bed the other night, tossing around, because there was a family meeting due in NZ, on a Sunday at 1pm.  My husband, Glenn, and me could not be there.  We live in Saudi.

We get updates on how he is and what's going on.

But getting second hand news is so....second hand.

The meeting was about Dad and his rapid decline in health, in spirit, in physical strength ever since he was placed into care, but more importantly, since he was put in hospital and doped to the eyeballs with drugs, because that's the only treatment modern medicine has for a man with Alzheimers and it's array of behavioural personalities.

Drugs that basically turned him into a zombie, wrecked havoc on his kidneys and made him feel....not right.  In his own words 'Gae, it feels like there's a cover on my eyes'.  Have a look, is there a cover on my eyes?'

But as my husband says, 'What else can they do Gae?'  He's such an annoying voice of reason sometimes.
I can feel so sad and angry and helpless all at the same time sometimes, reason seems a bit, well, reasonable.

We sent an e-mail with our thoughts prior to the meeting.  But it's not like being there.

There are times when I so wish I was home.  I mean, how is one meant to help being this far away.
But really, when I got there, what could I do??

Dad used to cry

Dad used to cry for no apparent reason which I’m presuming is normal for someone with Alzheimers, though I never did ask anyone... a bit remiss of me I guess.  But, something would cross Dads mind and he’d start to cry.  

I have to say the first time I saw Dad dissolve in tears I was taken back.  Mum had got used to it. She didn’t always enquire after his problem because she’d also got used to his not being able to explain the cause of his upset.  Again I presume this is part of the Alzheimers disease process.  Some days I would ask what was wrong, other days I would just watch to see if I could pinpoint a cause.

It looked to me as if Dad was suffering emotional overwhelm.  As though he could feel an emotion, and could feel where it came from, but couldn’t explain it.  For example he’d look at a photograph that had been hanging on the wall for years, and the emotion attached to the thought about that picture would overwhelm him, and he’d cry. 

Initially I wasn’t sure if Dad was always aware that he was crying.  Though I do think he knew he felt not quite right.  After a while, when he cried a lot, it seemed he’d just given in to his state, and he’d walk around the house looking at this and that, maybe carrying a photo with him, crying and muttering to himself. 

Are you OK Dad? 

Sniff, gulp, cry.

What’s wrong Dad?

Sob, weep, sniff… and he’d be off in his own world of…what??  What was going on in his head?  We didn’t know and he couldn’t tell us.  When he tried, I can’t speak for all the whanau, but I know Glenn and I, we could only guess, we didn’t understand.

During an earlier period in Dad's Alzheimers decline mum went on an overseas trip with her sister, they were gone for three weeks, Glenn and I stayed at the house most evenings and Dad would be distraught almost every night.  But he couldn’t tell us why. 

Glenn would sit with him and ask what the problem was, but the response was either ‘All’s Well’, which it obviously wasn’t or where’s my wife?   Or, he’d blame himself for Mum’s absence – ‘I’m bad, it’s my fault, she’s found someone else’ and he’d hit himself on the head, repeatedly.  Slap, slap, slap. That behavior, which he’d been exhibiting for a little while, as well as the crying, wasn’t easy to watch either.  We’d talk him out of that if we could, even if it meant holding his hand and returning it to his lap.  Then he’d hit his thigh or the armrest of his chair instead.

I tried to deduce, one day, why he’d take to himself like that and, if you ask me, it looked as though he was trying to knock his thoughts and emotions back into order - Why can’t I make this connection?  Why am I thinking crazy thoughts?  What is going on?  Why can’t I think straight? Why aren’t you working brain?….slap, slap, slap…Work brain, bugger you, work!!

How confused and muddled must your head be to want to slap yourself back into shape?  I can only imagine. 

I don’t recall that Dad ever had the opportunity to talk about what was going on in his head.   Whanau were there, but none of us were an authority in the field of Alzheimer’s.  We were only doing what, at the time, we thought was right. 

Hindsight is a wonderfully pointless thing sometimes. Maybe we should have called in an expert Alzheimers specialist to talk with Dad about what he must have been feeling, because we know now the realization you may be losing your mind is a scary thing.  

But in NZ, and little town NZ especially, Alzheimers experts are few and far between.

So, Dad was left to cry.

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?