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.

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.

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.

GPman, Respite, Reneging and Overwhelm

Here's a general outline, as chronologically as I can recall it, of how we came to the decision to put Dad into care, beginning with a story about a particular GP…. I’ll call him GPman.

There are draw backs to living in a small rural town.  The quality of services can suck.

We convinced mum that Dad should be sent to a GP to identify once and for all if he was developing Alzheimer’s.  I recommeded my GP....but the local guy won out.

Glenn accompanied Dad to this appointment for a number of reasons, one being Mum thought Dad would be better behaved with him there, and another being I didn’t have a terribly high opinion of this GP....I knew Glenn wouldn't put up with BS.

GPman avoided the topic of an Alzheimers test for the initial part of the visit.  Glenn eventually had to ask, quite strongly, if there was or was not, a test that could ascertain whether or not Dad may need to see a specialist for Alzhemers.

There was.  With a palpable sigh, GPman dug out the test from the filing cabinet and proceeded to ask questions.  Glenn had to chuckle at a few of Dads answers. 

Do you know what date it is today? 

Hmmm.  No.  Do I have to?  I’m retired.  One day runs into the next.  There’s no real need to know what today’s date is.

Do you know the name of the street this clinic is on?

Actually, I can’t think of it right now.  But I know where it is and how to get here.  If I need to see a doctor that's probably more important than knowing the name of the road, isn't it?

At the conclusion of the visit GPman said he would contact the relevant specialist and set up an appointment.  As Glenn walked out the door, he looked back to see GPman throw the notes from Dad’s completed test into the bin.  He thought that was a bit strange.  When Glenn recounted this to me afterwards I thought lots of swear words and one or two may have escaped my lips.

A few weeks later, we were still waiting on a specialist appointment.  Mum rang the GP’s office to see where the process was up to.  The Nurse looked in the file and informed Mum there was nothing from Dad’s previous visit to suggest a specialist appointment was required.  Why would there be?  Dr Dip Sh#*t threw the test in the bin.

Mum explained to The Nurse that we were promised a specialist appointment, can she please ensure we got it.  She did.

At some point post-Mental Health Specialist appointment arriving, Mum is told of medication that, though expensive, may hold off the Alzheimer’s for a year or so.  She agreed to it. 

So, for a while Dad was OK.  Well, as OK as he could be...

Over time, Dad's mental faculties did worsen.  We could handle his constant questions, his restlessness confounded us, and his suspicious delusions were a bit of humour.  Of concern were his aggressive outbursts.  We, the family, were worried about Mum being alone with Dad when he lashed out.  One day she showed me the bruises he had caused on her.  She told us how he sometimes took to her in the car.  We decided it was time Mum looked at her options, so enquiries were made about what was available.

Mum was going through her own anguish about Dads condition and her ability versus desire to keep him at home.

She agreed, eventually, to look at respite care to give herself a break.  She didn't think he needed fulltime care.  She told us she would only look at fulltime care when Dad could no longer toilet himself.  For now, she explained, in between aggressive outbursts, which she said weren't all that often, he was fine.  Basically, she had decided that she was going to care for him and that was that.

She never did get the respite care.  She reneged. 

She told us the story about taking Dad to a nearby respite facility to check it out.  He looked at the sign on the way in, then looked at her and said, with determination and his faculties obviously firing on all cylinders "I'm not staying here".  She turned around and drove out.  I don't think her heart was really in the decision at that time anyway.

I think Mum was in denial for a very long time.  I remember one night, Glenn sat down with her and said, "You do realise he is not going to get better.  He has Alzheimer’s.  He is only going to get worse."  The look on her face suggested she had been hoping otherwise.

Eventually, after one particularly vicious lash out, Mum decided she couldn’t care for Dad at home any more.  It was too hard.  The demands on her were too much.  She agreed to look seriously at what care was available.  

It wasn’t easy to come to this decision.  Up till then I think she had decided that this was her husband, for better or for worse, and she wasn't about to give up on him.  She buried a lot of the strain she was under behind an ‘It's hard, but I’m doing OK' facade. 

You could think she was being a bit of a martyr, but in fact she was being normal.  We’d heard from numerous sources that committing a loved one to care is one of the hardest things to do.   Spouses of Alzheimer’s sufferers almost always leave it till very late.

Mum was still working as well, in a role that had it’s own excitements, although I think this provided a distraction, a reason to get up and out of the house, a link to the real world.

Once she told us her decision, we gave all the support we could - which included regular phone calls to ensure she wasn't going to reneg again. 

The wheels were set in motion and Mum found the whole process involved with getting Dad into care a bit overwhelming.   So much so that one day she called up and asked us kids to sort out a few issues and do much of the leg work.   We did.

Maybe, if we'd known what would happen to Dad once he was in care, we wouldn't have been in such a damn hurry.

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.

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.....