Passing The Torch

So, I've passed the torch of this blog on to my nephew.  Largely because I can't comment on the trials and humour of caring for Dad as well as someone who is actually living with and caring for our Dad.

At the moment Dad is at home with Mum.
She couldn't stand seeing him in a home, crying, doped up and generally unhappy whenever she came down.  You see, he still remembered her and got upset when she tried to leave and was forever asking when they were going home.

So she took him home.

For some reason she thought the family wouldn't be happy with that idea.
On the contrary.
We love that he is back home.
Our concern was her having the support she needed to provide constant surveillance, as well as his necessary care.

She was getting worn out keeping him from roaming at night.
So she bought an alarm mat to put by his bed to wake her when he got up to roam.
Then she had to go find him to make sure he wasn't wondering on to the road.

The whole exercise was wearing her out.
So the family rallied and built a fence.
At least now he doesn't roam far.

Now our nephew is living at her house and helping her out.
Hence my asking him to take over the reins of this blog.
So the torch for stories and updates has been passed.
Thanks Daniel.

Beach Haven

Mum called.  They had found a new place.  She was happy, the rest of the whanau were happy.  It was a place we had initially crossed off our list for lack of space but now that Dad was a dribbling, shuffling shadow of his former self he didn't need the space.  He needed good care, in a permanent home.  The new unit was in Beach Haven.

Beach Haven Hospital suited the whanau just fine for a number of reasons.  Both my sisters live nearby and are able to visit often and Mum can stay with them when she comes down to visit.    The unit doesn't mind the odd bit of rongoa either.  Being part of a mixed ethnicity community, largely Maori and PI, they are used to whanau wanting input so, provided we keep them informed, they are happy for us to massage, use herbals or whatever we want.  The home doesn't have lock down and they encourage family to visit.  And though there isn't a paddock for space outdoors, there is a small lawn and garden with outdoor decks.

Mum's concern once he was in the unit was reducing Dad's zombie meds.  The doctors said they would do what they could over time and have stuck to their word though Mum did worry it was taking longer than she wanted.  Dad has been there for the last year.  In that time he's been moved out of the high care dementia unit to the other side with 'less real crazies' as my son likes to say.

We are so glad the placement roller coaster is over.  It was a long, long year.  And it was only a year!  I think it took a while for us all to settle into this unit.  For some time we were holding our breaths, expecting to be thrown into disarray again at any moment.  Thankfully Beach Haven has been just that a haven - for all of us.

The Possible Problem Identified.

We discovered, through a round about fashion, that Dad was receiving medical care for 'something' though mum wasn't quite sure what the something was.  Eventually, at the family's insistence, a doctor sat down with mum and said something like this:  'We think your husband has a kidney infection.  To treat the infection he needs to be on meds.  To keep him compliant we need to dose him to the hilt on zombie drugs.  It's highly likely that your husbands irascible attitude in the care unit was because he was in pain but couldn't tell anyone'.

I don't think Mum knew Dad was being irascible in the unit, at least, not more so than usual.  Every time the family visited we were told he was fine, hence the shock when he was moved out.  Units shouldn't lie to families.  It's not nice.

The information on the kidney infection we could digest.  But why does he seem to be getting worse? Because he certainly wasn't getting better. The Machine couldn't answer that.
They did tell us, however, to prepare for the worst.
That's shocking news when you get it!

Then one Doctor, one who didn't want to give up so easily, told Mum that they could better identify Dad's problem if he had a CT Scan.
How are you going to get him to lie still for that? the whanau asked.
We'll knock him out! they said.
Say what? the whanau said.
And be prepared for him not to respond well to that, they said.

An email was duly sent to all the whanau explaining what The Machine had suggested and the implications and asking for whanau input into the decision.  One of the questions was, 'What's the point, he's old, every one dies sooner or later'  Another was, 'If they do find something what will they do about it?  If he needs surgery there's a high chance he won't survive it because he's old, so again, What's the point?'  And then there was always the thought, 'He deserves the best.  How do we give him that?'

And while we were all mulling this over my sister's partner, who cares for mentally disabled and elderly people in their homes, asked a simple question.  'Has anyone from the Dementia Unit or Geriatrics been in to assess him?'

Well, the Machine stopped.
Ummm, actually, No, they said.
Don't you think it might be a good idea? my sisters partner said.
I guess that might be an idea, they said.

You see, when Dad was sent from his last home he went straight to a medical ward.
He was still on a medical ward.
Medical doctors were looking at him from a medical point of view which isn't always a good idea for the elderly who can't articulate how or what they are feeling.

So someone from geriatrics came in and guess what?
Dad was on the wrong drugs at too high a dose for an old fulla.
That's why he was getting worse.
Meds were changed and in no time he was improving.
No need for a CT scan.
No waiting for the worst.

'Well, bugger me! we all said.

And then, after heaving a huge sigh of relief, the Machine wanted him out.  So the search was on again for a new solution to his housing problem, because his last lovely home couldn't take him back.

Round the clock whanau

The new plan required the whanau to be present at the hospital around the clock.

The staff didn't ask for them to be there.  The whanau decided this is what he needed, so this is what they did.  I'm not even sure if the staff liked the family plan.  None of the family ever mentioned the staff reaction to their presence.  I get the feeling what anybody else thought was of little consequence.  This was the family plan, like it or lump it.

The family helped keep Dad from taking the cannula out of his arm. among other things.  I have no idea why a cannula was in his arm, but there was one and the staff wanted it to stay in.  The Machines method for keeping it there was to tie him up.  I'm not sure why they thought the family would like that idea.

We were back overseas through this period and we got messages about how things were going.  Being round the clock watchers isn't easy and is a huge commitment, but it's a darn site better than having your father tied to a bed like a mutt.  For weeks.

The stories were also full of humour.
Like the times Dad would be grumpy and bitching and out of sorts for whoever was on watch, then one of the grandsons would walk in and straight away Dad would brighten up as if the sun had just walked into the room.  The rest of the family would later joke with the grandson, 'What's so good about you he cheers up when you're around?'

It was one of the whanau who suggested to the machine that they weren't approaching Dads care properly and suggested a solution.

Not sure what to write

It's been a while since I've written anything on this blog but that's because I'm not sure what to write.

My mother sent me a message one day, because I asked her if she could send me some information about Dad and his care (or lack of it) when he was sent to the hospital again.  It was a sad message and I thought I would put it on here.  But I can't find it.

She told us how Dad was treated like an animal in the hospital.  Tied to the bed.  Chained like a dog she said.  She couldn't believe such a thing happened in this day and age.

I know she was shocked.
I'm fairly certain she was sad.
Then, I'm guessing, she picked herself up and said, 'To hell with this.  No-one is treating the man I vowed to love through sickness and in health like this'.

The family were called.
A plan was implemented.

Mum doesn't like talking about this particular period.  She told me to ask my siblings.  I haven't got round to it.  Perhaps if I find the email mum sent I'll publish it.

Moved, again.

Dad was moved again.  He didn't stay long at the new place.  When we asked Mum why they moved him out she wasn't really sure. 

Perhaps the mixed messages we received at the start should have warned us.  First they said, 'Yes, visit often to help him remain calm'. Then, once he was there we were told, 'No visitors for at least the first 3 weeks so he will settle in.'

We complied.
Not visiting for three weeks was very hard on Mum.  Her biggest fear was that Dad would forget her.

He wasn't taken off the zombie drugs in the new place. His eyes still sagged, he dribbled, he couldn't always comprehend who was in front of him and his speech was slow and laboured. Oh how the machine had seriously fucked him up. 

But we smiled when we visited.
We talked.
We tried to engage him.
We looked into his eyes.
We held his hands.

We asked if they would reduce the zombie drugs.  They made promising sounds.
We lulled ourselves into thinking this nice new place was perfect, he was fitting in, they certainly were knowledgable about dementia.  And then WHAM.  He's moving.

Just the week previous we'd gone in and organised payments, added in little extra's like costs for a weekly podiatry and outings.  All for nought.

They decided to move him.
He was put back into hospital. 
His zombie drugs were increased.
And his care seriously went to hell.

Zombie Drugs

Dad was in the dementia unit of the hospital for quite some time while the whanau and the health services tried to find another place for him to go.

He was doped to the eyeballs the whole time.  He was a zombie.  Sagging eyes, drooping lips that dribbled, hardly able to focus, mumbling speech, bent double and shuffling when he moved.

My sister has a video of Dad just weeks earlier dancing.  Real dancing to rock and roll.  Now he was reduced to a zombie shuffle.

The family kept up their regular visiting though it was so sad seeing him like this and feeling so helpless - after all we were just family.  The big medical machine knew best.

Mum was asking when they would reduce his drugs.  They made promises, but of course, he had a violent record and they didn't have many staff so keeping him doped and docile suited them just fine.

Another place was found and with high hopes the family executed his relocation. 

The unit did seem really good.  The staff seemed very knowledgable.  There was a bit of space for walking around  and, more importantly, there was no lock down.  Yes, we thought, this place has promise and we were hopeful of long term placement and a reduction of zombie drugs.

A Nice Place

Courtesy: www.carvedwalkingsticks.com

It was decided to move Dad to a nice place.  Somewhere with less carpet and therefore less pee smell. 

Mum sent this message  July 11 2010 at 3:25pm

'Danny, Maeva and I looked at a new rest home facility yesterday. Its in (blank, blank, blank) and with luck the owner will phone either Danny or me tomorrow and we can start things rolling for Dad. Its a newly opened place and they have three empty rooms. Specifically for dementia in the nature of where dad is at. We are hopeful.'

Long story short our hopes were dashed.

This was where Dad's care and health started going to hell.

Dad managed to escape from this establishment twice that we know of.  He'd wander off down the road and, by all accounts, end up asking shopkeepers to call his family to come get him.  It's a miracle he could remember the phone number.

As the family lived some distance away the first response was to call the care facility and ask if they knew where Dad was....fairly obviously they didn't.

Then, one day, the facility called the police.  Dad had 'gone off' (Kiwi talk for had an outburst) and they couldn't handle it.

He had used his walking stick to attack the property, smashing glass and, I believe, having a go at the staff.  The police carted him off and he eventually wound up drugged to the eyeballs in a hospital.

It turns out the new  'no care' facility had no idea how to handle Alzhiemer's patients.  They had a 'do it my way and don't argue' attitude with the clients which, anyone who knows anything about Alzhiemer's can tell you, ain't gonna work.  They were also of the door locking brigade and didn't allow free movement between the garden and the house. 

This, apparently, is what led to Dad 'going off'.

The story goes something like this: He asked to go out to the garden.  Staff unlocked the door and let him out.  Then they locked the door after him and forgot about him.  (Not being aware of their clients where-abouts was a major fault of this facility).  Eventually he wanted to come back in.  No-one was around to unlock the door for him.  This got him upset and very...unhappy.

When Dad's temper gets up its quite fiery. 
This day, his fire was raging.
Dad smashed his way in then smashed lots of other things too.
But quite frankly I'd get shitty being locked out and forgotten about in what is supposed to be my new home.

Suffice to say, Dad never went back there.
Mum decided she didn't really like the place and, hardly surprising, they wouldn't take him.
He stayed in the hospital for a while, drugged like a zombie because that's what hospitals do, till another nice place was found,

His extended stay in the hospital on zombie creating drugs was the next step in Dad's downward spiraling care.

We decided a hospital is definitely not nice place for Alzheimers sufferers.

Bumps and bruises

Every so often we would turn up and find Dad with plasters covering various bumps and bruises.
It did make us wonder what the heck sort of supervision was provided in the care facility. 

On one occasion Dad was playing the piano and one of the gents took exception to it.   I'll admit he's no Beethoven, not by any means, but he's never got a fat lip before because of his playing.   Staff told us the gentleman in question was usually so quiet and he and Dad used to get along famously....Uh huh.

The two questions - How the heck did ths happen? and How can you make sure it won't happen again? were run by management.  To be honest, I can't recall what their response was. 

It's quite upsetting visiting your confused father with a swollen lip and plasters on his face.  One does contemplate, just for a moment, finding the offender and giving him the evil eye.  Though that's kind of childish and pointless.  It's obvious he's stuck in the same hell condition as Dad and I can only presume, based on his outbursts at home, that Dad is not always nice as pie toward the other patients either.  Energy is better spent on a positive visit with Dad who, by the way, has no memory of being biffed at all.

The fact is grown men thrown together will get on each others wick and get angsty - verbally or sometimes physically, either pushing and shoving or the occasional fisty cuff.

Most times the staff can intervene and send the boys to their corners long enough for them to forget they were shitty in the first place and no one gets hurt.   Other times management had to call Mum and tell her the damage.

We've been told staff are on higher alert when the moon is full - the patients tend to get more aggressive then.   I wonder if the first werewolf story was the result of an Alzheimer's patient going off?

It's quite hilarious, and slightly frightening, watching elder men setting to each other.  I do wonder how they stay on their feet given their age makes them wobbly before they decide to throw a wide punch.

This makes Alzheimer's units sound like boxing rings.  They aren't.  The other factor that adds to bruising is age.  Falls are common.  And any bumps will show up on the skin - I have watched Dad try to force himself and his walker through tables and chairs because his mind was dead set on going that way.  No amount of coaxing would change is course so he was left to bump his way through.

And sometimes it is necessary for staff to man-handle the men.  They may be old, but they can also be stubborn and surprisingly strong when they decide to 'go off'.  And man-handling the elderly, regardless of how carefully you try to do it, tends to leave bumps and bruises.

Helping Dad

The family decided the facility was not appropriately helping Dad by providing the sort of activities he would better enjoy.

Though this place did have a number of men on its payroll, they were there as carers, not occupational therapists or recreational assistants.

Prior to his being admitted the manager did say they would be getting a gardener, however, in the time Dad was there a male did not materialise who was available to spend man-time doing man things with the men.

I'm not sure they were actually that keen to get such a program implemented.  Not surprising really, there were obvious dangers to a gardening and building program for the mentally and behaviorally challenged, such as taking to each other with a hammer!

So we came up with a plan ourselves of helping Dad out.

Basically, we wanted someone who could spend more one on one time with Dad and encourage him to do the sorts of things we knew he enjoyed - like pottering in the yard, building ti-tree fences, walking to the shops or painting what ever picture took his fancy on whatever space was available.  I envisaged this person would bring the necessary tools and take them home again at the end of the visit (to keep the management happy).

A family friend, who worked in health, liked what we had in mind and pointed us in the right direction to find a suitable worker to join Dad for a couple of hours a day.

The person we found was a lady.
I don't think she ever brought tools.
Dad, however, did get used to her company. 
He loved the one on one when he wanted to chat.  She had sense enough to recognise when he wanted alone time - so she left him alone.

Her presence did seem to settle him.  I think it made mum feel better too, that someone was on site whose sole purpose was helping Dad.

Lavendar Spray

One day we were visiting Dad when the staff had to use Lavendar Spray on him.

Actually, I think they used lavender on him fairly frequently when he first moved in.  One of the reasons I liked this establishment was the fact they used alternative therapies with the clients.  Their motto was to limit reliance on medication where drugs were not required.

I failed to ask a few pertinent questions, such as which alternatives, who was their consultant, what were their qualifications etc, etc.

Basically this place used aromatherapy, which meant a lot of lavender oil, and distraction techniques.

Unfortunately Dad wasn't exactly distract-able.  At this point in time he was still aware enough to know he was not where he wanted to be.  Home.  With mum.

He still recognised the immediate family when we visited, even if it required a minute or two of prompting to get the actual name straight.  He could also, occasionally, identify some members of the extended whanau. When friends visited, he usually didn't know who they were, but he pretended to.

That's one thing Dad was good at, making anyone who came to see him feel so welcome, like a long lost friend.   It did take a few minutes for some visitors to click he had no idea who they were and was not keeping up with the conversation.

If Dad did get himself worked up into a state the staff would attempt distraction techniques and if that was looking unsuccessful they'd combine this strategy with spraying lavendar oil into the air around him.  Always talking quietly and trying to get him onto some other thought.

I'm not sure how much the lavendar contributed to Dad eventually returning to his room, grumping all the way.

Of course, the Lavendar Spray technique to settle a stubborn Alzhiemers sufferer like Dad did not always work.  On one occasion that I know of, because I was present, the staff decided to attempt some heavy handed tactics, which resulted in me and mum being upset and Dad using his walking stick as a weapon. 

Fortunately common sense did prevail and everybody backed off till we had Dad sufficiently calmed down. It was fairly obvious the best remedy for Dad was Mum staying right beside him.

Personally I would have preferred if they also utilised homeopathy.  They could have called in a homeopath, done a full consult on Dad and given him homeopathics. 

But, because homeopaths are more expensive than aromatics Dad got to smell of a lot of lavendar spray

Arriving at the gates

One day, as we were arriving at the gates of the facility where Dad stayed, we looked at each other thinking "What the?"

Obviously something was going on. 

Residents and care givers were milling in the car park.  There was an air of confusion.  Then Dad spotted us and came running - yes running - with walking stick waving high in front.  When he got to the gate he exclaimed, 'Finally someone here with a few brains.  You'd better come sort this out!"

It turns out the facility had had a fire drill.   

As the story unfolded, things got worse.  Apparently someone, we are hoping not staff though this wasn't confirmed, had run around screaming "Fire!" at the top of their lungs.  This had upset some of the residents who had locked themselves in their rooms and refused to budge.  Others had headed for the hills and were still running in circles. 

Staff were trying to account for everybody. 
Dad, as with a number of the old folk, wasn't sure what was going on. 

We decided to separate him from the pack (with permission of course) and take him for a drive to calm him down a little.  He was only too happy to get away from those 'silly buggers with no brains'.

As we drove Dad to McDonalds, and the whole time we were there, he talked, recounted, opined and cussed about the excitement of the morning, which must have been quite stimulating because he didn't miss a beat even while devouring a Big Mac and fries.  I commented to Glenn how alert the whole episode had made him.

The minute we stood to go a switch flicked in his brain.

"Where are we going?"
"I'm coming home with you now?  Back to home home.  Not that other place."
"Where's mummy - are we going to see her now?"

When the answers he received weren't the ones he was looking for, I can only presume his mind went into survival mode and clouded over till he was not making sense.

As we were arriving at the gates of the facility for the second time that afternoon, all excitement had passed and Dad was just a resigned, sad, confused, shuffling shell.

Dad's back home

Having dad back home did not turn out as well as mum hoped.  She realised very quickly that he was no better.  In fact he was possibly worse.

The whanau, generally speaking, supported Mum in taking Dad back home and we hoped that it would work, though were not kidding ourselves.  There was many a discussion on whether or not it was a good idea and many a suggestion was made on what support would be required.

What we did know, was the only way to see if it would work was to try.

Maybe the 'Powers That Be' were completely wrong and Dad wasn't as bad as they said.  Maybe, if Mum could keep him on the drugs the facility used and implement some of the strategies they did, Mum could keep Dad 'settled' at home. 

Long story short he was a lot more work than she thought he would be. Added to that, Northland did not have the 24 hour support we knew mum would need.

In fact, I think having Dad home made her realise just how much she had put up with before.

If Mum had brought him home with high hopes of a miraculous recovery and visions they would live happily into old age together, they were dashed.

She made the decision a few weeks later to send him back to the care facility.

This wasn't too difficult.

The manager was very aware that placing a partner then removing him, then re-placing him (or her) is a common pattern with the partners and spouses of Alzheimer sufferers.  So they welcomed him back with open arms.

He even got a new room.

Unfortunately, the facility had not miraculously upgraded in Dad's absence, so efforts were re-kindled to find something a little better.   Of course, this process had to start from scratch as places we had put his name at previously had taken him off the list.

We thought Mum had reconciled herself to having Dad in care for the rest of his days.  We were wrong. 

In the back of her mind is the thought that one day, Dad will be able to come back home and I have to say, much as it may seem improbable now, I'd still like to see that happen.

Settling Dad In

Settling Dad in to this first facility was a lot of work for the whanau.

The family visited as often as possible (which was quite a lot) because the unit manager was of the opinion that Dad needed familiarity to help him settle.  This was different to most other places that ask family to stay away during the settling in period.  We found the managers approach suited us just fine.

The major draw card with this facility, however, was the space and the views of the water. 

Dad was still very mobile and he still liked to be outside.  He may not have been able to cart wood, but he still thought he could - or at least he thought he wanted to.

On one visit home, Dad showed me a couple of viewing galleries he had made out the back using what ever he could get his hands on, which wasn't much.  A couple of chairs, some tree branches, some metal found lying around. 

One viewing spot was made by scratching soil out from around a tree root to create a flat area.  He used a stick to build this area.  He wasn't allowed tools and the unit hadn't quite managed to find the male gardener yet.  This is the type of activity he was used to.  This is what he wanted to do - not play scrabble.

We bought some paint so Dad could paint the back fence if he wanted.  It turned out we spent more time painting than he did.  He would come down with us and get started and then do what he used to do at home - leave us to it while he side tracked onto something else. 

I have to say, the painting really was quite therapeutic.

But Dad still cried.  He wanted to know why he was there.  He asked what had he done to deserve being left here.  He wanted to know when he was going home.  He wanted to know why Mum wasn't staying with him.

Some days he convinced himself he was on a marae with a group of other people.
One day he made us laugh when he said, "Isn't it great to have a place like this for all those people" indicating a couple of obviously challenged residents.  There was, of course, absolutely nothing wrong with him.

It would be nice to say he eventually settled into the place.  At the very least it did become familiar to him.

But mum found it hard to leave him there.  I think she also found the conditions a little hard to take. 

The thing with dementia units is that they do tend to smell of pee.  No matter how hard a unit might try, someone will still pee somewhere - I'm referring to the men mostly.  Dad used to pee off the verandah onto the grass because...well, mostly just because. 

This unit was quite old - it still had carpet in the hallway which did tend to reek if someone thought the corner in the corridor looked like a great place for relief and the aroma of pee does get to you after a while.  

Long story short, after a few months Mum decided Dad hadn't settled as well as she'd hoped, though mostly I think she was feeling a little guilty for putting him there, so she pulled him out and took him home.

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.



The Plan For Moving Dad

Once we'd chosen a care facility we then had to devise the plan for moving Dad in.

He was still living up North and usually gave mum grief when they travelled.  First there was the constant questions....'Where are we going?'  'Why are we going?' and, before they'd even got out the door, 'When are we coming home?'

Mum used to explain everything to Dad the night before they were due to go somewhere.  I often wondered why she bothered, because I knew, like the rest of the family knew, that he'd forget five minutes later.

However, Mum insisted on getting his approval for a trip first and the night before he was always agreeable....but come the day of the journey the brakes went on.  Home was safe.  Home was familiar.

But home wasn't a good option any more.

I can't remember the exact details of "The Plan For Moving Dad".  I do recall that most of the family were involved in some shape or form.  Be it as drivers, passenger companions, meeting him at the facility and touring him around, helping mum out with the paper work and then distracting him so she could leave.



In the back yard of the care facility....look at all that space!

He had got to the point that when mum was out of eyesight for 5 minutes (sometimes less) he wanted to know where she was.  Our usual tricks for telling tall tales to keep him relatively happy weren't having as desirable an effect as they used to.

The staff knew it was best for her to leave while he was distracted by the rest of us, without saying goodbye.  (I was actually surprised she complied).  Then we had to figure out how to excuse ourselves one after the other - not en masse.  And all the while, 'What is this place?  Why are we here?  Where is my wife? We'd better and go get her.  Is she all right?  When are we going home?'

My sister was the last person left with Dad that day.  While we were waiting for her up the road I did wonder what her plan was for excusing herself.

One of the hard things about leaving Dad, was knowing that he knew that he wasn't at home.  And there wasn't any one familiar there.  And that he would be looking for Mum - his security blanket.  It really is sad watching him feeling lost.

If there were suitable places closer to home maybe we could have taken time familiarizing Dad with the staff and the venue as part of a more lengthy 'Moving Dad Plan', but there wasn't, and still isn't, so we just did the best we could.

Dad's Singing

Dad was reading and writing and singing when I visited him today.

This is big news.  Dad has not written for quite some time.  He used to write a lot.  It was great to see him reading - he hasn't done that for a while either. 

The whanau have made a few photo albums with pictures and clippings and favourite verses for Dad to look at while he's in care.  We take them out when we visit partly for something to talk about, partly to test his recognition.

Today the writing barely made sense, but the reading went quite well I thought.

I've been here for a few weeks visiting Dad.  For the last few visits he has been quite out of it.  Partly with drugs, partly his condition, partly the time of day - mornings are much better.

Today he had just had a massage courtesy of my sister and her partner.  Whether or not this had an effect on his mental faculties I don't know - he may have just been having a good day. 

It might be worth noting that the facility had auditors visiting today, so maybe they had cut back on the 'keep them calm' drugs for the patients.  I wonder if we'll ever find the answer to that.  Maybe I'm just being cynical and not nice.   Dad certainly didn't look as doped up as usual.  It's easy to tell when he's under the influence of excess medication - he has cloudy eyes.

One thing I have deduced is that Dad still responds to music.  So I often sing when I visit.  He sometimes recognises the tune and sings along.  My sister was singing during his massage today and quite possibly had warmed up his memory and vocal chords.  He sang along to the verse he'd just read.

It's a far cry from how Dad used to read and sing but it makes everybody feel good to see he still has it.

Finding a place for Dad

There are very few places, we discovered, that are set up for Alzheimers sufferers like Dad : those who don’t want to be sitting around all the time; those who have spent their lives outdoors and don’t want to be locked inside, only to be let out when the care facility says you can; those who like space so they can get away from others; those who want to be active with gardening and painting fences and mowing lawns, even if that only lasts half an hour and then they want to sit and enjoy the view….Dad has Alzheimers - he’s not a cripple and he’s not a vegetable. 

We visited numerous care facilities that suited the level of care we had decided Dad required. 

On a tour of one facility the manager said “We let the patients roam freely”.  But all the doors to the internal garden were locked and it was only early afternoon…. obviously their interpretation of roaming freely differs from ours.   And in the same breath she said, ‘We lock the bedrooms during the day’…..struck that place off the list.

Most places had very small outdoor areas.  My sister said she'd go loopy with such a small place to walk round and round.  We would joke that obviously gardens for Alzheimers patients didn't need to be large because, once a patient had made his (or her) way round to the beginning, it would all look new again.  Dad's memory wasn't that bad yet. 

We found most places had organized activities like card games, hat making and scrabble. Dad never did sit still for card games.  We knew the chances of him doing that now, were slim.  And he’s a stubborn mule.  If they tried to make him participate, he’d eventually get shitty, we knew that.  

He needed activities that were more robust.  The one place that said they provided gardening specifically for the men, and an experienced worker to boot, had a waiting list.  This may sound shocking, but Alzheimer’s patients don’t tend to move on (die) that quickly.  Though their mental health may be on the blink, physically they can be in fairly good nick.

A couple of places said they would be providing gardening and such like for their clients once they found the right staff. We placed Dad in one of those – in the weeks he was there, they never managed to find said gardener.

There are very view places with a nice view, or one unobstructed by tall metal fences designed to keep you in...and then they tell you how they want your loved one to feel like they're at home.  It’s actually amazing, or is that shocking, how un-homely most Alzheimer's units are.  Most struck me as being very clinical. 

There was only one facility that offered alternative therapies, and those were limited.  How sad…

We put Dad's name down at a few places.  Three measured up to our criteria.  One, as I previously mentioned, was full.  The other was miles away from any of the family.  The other was not specifically for Alzheimer’s patients – they took a range of clients.  And, they weren’t a ‘recommended’ facility.  Meaning the local health honcho’s didn’t have them on their books as a ‘secure unit’, which is what they deemed Dad required.

We chose the last one primarily because it had space - loads of space.  At that point in time we thought Dad needed space.  The room we chose had a great view over an estuary.  And it didn’t have lock down – these people knew what free roaming meant. 

It was also only going to be a temporary measure, a place to stay until the other unit, the one we really wanted, came available. 

If only it had….

Frequent Questions.

As his condition really started to set in, the most noticeable thing, for us kids anyway, was the frequent questions.  Dad was repeating questions.  The same questions.  Constantly.

Do you know where your brother is today?

He's at home Dad.

Oh, is he. That's good.

So you know where he is, do you?

Yes Dad. He's at home, doing stuff.

Oh.  That's good he's doing things.

Where is he while he's doing these things?

He's at his place.

Oh. That's good.

Tell me, just one last time, I probably asked before. Your brother is at home?

Yes Dad.

Ok, just one more time and then I'll be quiet.  Where is your brother today?

Ummmm - You want a cup of tea Dad??

My brother and law came to visit one day and he said, ‘what would happen if you didn’t answer him when he asked for the 3^rd time?’  I had to say, I’d never thought of that.  I presume he’d just keep asking, or he’d ask another question.

I do know, though not as well as my mother knows, that living with constant, repetitious questions is very, very draining.  We short term visitors, which is how I’d label Glenn and myself, because we only turned up at home for a little while every couple of days, offered Mum a bit of a reprieve. 

We also became very good at rephrasing the same reply.  Why?  Well, it got darned boring saying the same response over and over again.  And I thought that maybe, rephrased, the answer may resonate somewhere in his mind and stick. 

But, as I’ve said before, with no resident expert offering salient advice, I have no idea if anything we were doing was right.

The only thing we knew for sure was he’s our Dad and regardless of any ups and downs we may have had, we love him heaps and we don’t think he deserves this bloody disease.

I haven't seen your brother today, have you?

Dad, you already asked me that question.

Did I?  What was your answer to my question then.



The brother in question.

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.