Safety and Sanity Move

When it comes to Alzheimers, it's not just the sufferer whose sanity and safety is of concern.

My sister came to stay at Mum’s place, as live in help with Dad.   She came with her two youngest boys.

I’ll admit we weren’t sure this was a good move.  Dad liked his house his way.   Having extra people around, especially lively young boys, was bound to get up his nose.  But mum was adamant everything would be fine.  She can be a stubborn woman sometimes.

Mum was, and still is, involved in local community activities.  I think she wanted someone around, someone who Dad knew, someone she was comfortable with, to take the attention off her and keep Dad happy and occupied while she did her own thing.

Sounds good in theory, but everybody has a life to live and that included my sister and her boys.  Mum did enjoy their company and my sister did help take a load off in a lot of ways but, as time went on, Dad got worse in his acceptance of ‘others’ in the house.  He started to view the boys rather negatively. 

I’m not sure, actually, if he was jealous - they were interference to his direct access to mum.  There were times, I'm sure, when he thought he should be the only one who was allowed her attention.  Or whether he saw them as a reminder of his loss of control.  Not only was his mind playing tricks on him but he no longer ruled his own home.  The dynamics of who was in charge in the household had moved away from him, to Mum. 

He thought he should be able to tell these boys what was what and they should listen.  They eventually figured out it’s best to stay out of the way, which is hard to do when you all eat together.  A TV room was created upstairs so they could get some peace and distance themselves from any craziness downstairs. 

I give them their dues.  They were living at mum's for a while and many times were able to take humour out of less than humourous situations.  Rehua would recount, with a twinkle in his eye and a laugh, Poppa's getting mad over something he himself considered pointless, like having breakfast.

Dad- have your breakfast

Rehua- I've had breakfast

Dad - You have to have breakfast

Rehua - But I've already had breakfast.

Dad made lots more rumblings about having breakfast.

Rehua, from memory, went and had more breakfast, which for a growing boy suited him just fine.

Though some things could be taken with humour, I would hazard a guess that a childs patience and understanding of an angry Poppa wears thin eventually.  Especially when the bad, seemingly irrational mood rears it's head too often. 

Dad’s frustration with whatever was, or was not, going on in his head, made him angry.  His Alzheimer’s, that’s what I’m blaming anyway, made him harder to deal with and pacify.  

Apparently there comes a point where, if you can distract an Alzheimer’s sufferer long enough, they’ll forget what annoyed them and you can move them on to another activity.  Dad was not at that point. 

Once he got an idea in his head it could be difficult to shift him.  It was as if the idea went round and around like a looped message with no stop button.  And if you did manage to distract him, it was temporary.  The recording would start again.  It seemed the only thing that distracted him was a new looping message and we hadn’t figured out how to start one of those.

Usually Dad took his frustrations, when they built up, out on Mum.  Shouting, mumbling, glaring and threatening.  Eventually he could no longer contain himself and his anger spilled over to the boys. 

It’s sad to think that the boys’ memories of Dad may well be little more than an old angry man.
It was time to move them out of the house, for their sanity and safety.

Taking Random Pills

Mum discovered one day that Dad would pick up any random pills he found lying round the place and take those. 

I’m not actually sure if he knew what his pills were for, he just knew he was supposed to take pills.  So, if he came across a bottle of tabs, he’d ponder if he’d taken his today, decide no, and take what was on hand.  

And what was on hand?  Mums’ pills, past their due date pills, tabs from old and changed scripts.  And, according to hubby's memory, a very old bottle of my grandmothers pills – and she’s been gone for a while.  I have no idea where Dad had been scrummaging to find those.

When mum went on her holiday, there was a bottle of Dads pills on a shelf in the kitchen. Mum had pointed them out before she left.  I presumed Dad took them as a daily routine, he was, as far as I knew, still capable of that.  My presumption may have been a little off track.  One day when Dad found a bottle in the bathroom and returned it to the spot on the kitchen, he was perplexed as to why there were two bottles there.  Plus the one’s on the table in the lounge, next to his chair.  He queried which ones we thought he should take.

Which ones are yours Dad?

These I think

Is your name on them?

Oh, that would help wouldn’t it?

I looked at what he was holding.  The label on one bottle, the one he was more focused on, was so worn you couldn’t read it and the edges were coming unstuck from the plastic.  Using deduction I suggested he take the newer tabs, the ones with his name on that you could read.  I should have biffed the other ones, but didn’t.  Instead I put them in bathroom cupboard with the rational ‘these must belong to somebody’.

When mum got back from her trip and we told her about his crying she told us Dad often got upset over things, but not as extreme as we were describing.  She took him to the doctor who decided it must be his blood pressure playing up, so changed his pills.  That’s when we mentioned the pill story to Mum and she recounted her tales of catching him taking her tabs, or roaming around the house with tablet containers of unknown origin, or taking more tabs when she’d already given him his daily dose.

It’s just as well we aren’t a seriously sick bunch up north – well, not physically anyway, or lord knows what he’d have been taking.

It was time to empty the house of all unnecessary, unnamed, out of date pill bottles, because there were a few lying around.  Coincidentally, the local health promotion team were spreading the message to check your pills and clear out any non-current scripts.  Timely.  The chemist also organized for blister packs, complete with current dates, so mum could tell whether Dad was keeping up with his meds.  

These were good strategies as far as managing his medication and reducing the taking of random pills was concerned, but I don't recall it helped him much...Dad kept crying. 

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.

The Process is Raising Eyebrows.

The process of finding a care facility for Alzhiemers sufferers isn't difficult, but in Dad's case it did raise some eyebrows. 

From memory, once Mum had decided to place Dad in care the process went something like this:

• She contacted the Mental Health Unit to organize a referral for Needs Assessment.

• The Mental Health Specialist visited Dad at home to correctly assess his status so a report could be sent to the Needs Assessor.

• Shortly thereafter, the Needs Assessor contacted mum regarding the Needs Assessment - she asked a few more questions.

• The Needs Assessor then advised Mum (I believe via letter) on the level of residential care required, based on all reports received.
  
  I can’t remember the exact terminology, but basically Dad needed Level 3 care.  We found out later that meant Psycho-geriatric care, which we eventually dubbed Lock Down.
• At some point Mum had questions on how to pay for care and any subsidies available.
  
  This is where she hit the wall of overwhelm and called in the whanau to help clarify things.   I understand she was getting visits, phone calls and information from a lot of quarters, not to mention us kids asking how things were going, was she on top of it etc – it was all a bit much to deal with.

• Discuss options and plan of action with Needs Assessment and Service Co-ordination.
  
  Mum was living up north. We, the whanau, had decided it would be best for Dad to be in Auckland for a couple of reasons.  Firstly, there were only 2 facilities in Northland that the Powers That Be said were suitable.   The one nearest Mum, about an hour away, had a less than agreeable reputation – so we struck that off the list without bothering to view it.  The other one was two hours drive away from Mum and three hours drive from any of us. 
  
  Secondly, we figured if Dad was in Auckland he would be closer for all of us to visit, taking the strain off mum a little.
• A website with recommended facilities for Level 3 patients in Auckland was sent to us, so we could go and have a look.

• Visit a number of rest homes/hospitals.
  
  My sister and I did most of this. I think mum was still somewhere between denial and overwhelm, so didn’t want to face this task.  Besides, I guess she figured we would find the right place.
  
  It was at this point, after we had viewed the first care center, that we knew Dad's assessment was wrong.  Dad was not in need of Level 3, psycho-geriatric care.

• We called the Needs Assessor.
  
  Why have you decided Dad needs Lock Down?
  
  She explained, her role is simply to ID the type of facility required based on the reports she receives from the Specialists.
  
  We rang Mum to determine who Dad’s Mental Health Specialist was.  She told us he was on holiday, it would be best to get hold of the Mental Health Nurse.
  
  We duly rang the MH Nurse and asked who the Covering Specialist was. She played Gate Keeper and, after ascertaining we had issues with the Level 3 assessment, which she herself was surprised at, (she was fairly certain Dad’s Usual Specialist wouldn’t have supported this decision), she offered to find out what was going on.
  
  She got back to us with this:
  
  The Usual Specialist, who went to see Dad for a one on one visit when Mum initially requested a Needs Assessment, has gone on holiday and took Dad’s file with him. (Raised eyebrows – What?)
  
  The Covering Specialist only had previous notes to go on.  He never did a one on one with Dad and I don’t believe he ever rang Mum.  He wrote the report that went to the Needs Assessor based on available notes. (Frowny eyebrows – What?)
  
  If we wanted Covering Specialist to do a personal assessment, we will have to wait till after the New Year.  (We were currently in late November)  Until then, our options were keep Dad at home or send him to Level 3 Lock Down.
  (Normal eyebrows, deep breath, let it out slowly).
  
  We asked 'Why he couldn’t be sent to a Level 1 or 2 facility?'  Because care facilities only accept patients based on their assessment level.  As Dad was on L3, a facility set up for care of lower level patients would not take him.  Soon after this phone call we learned that Dad had earned too much over the years to be eligible for any government subsidy.  This meant he would be paying all accommodation and care expenses himself.  In other words, a private patient.
  
  We also found out that, if you’re privately paying, you don’t actually need an assessment.  The assessment process is largely so the care facility can ensure they’ll receive their fee from the government, and different levels of care receive different funding per patient.
  
  If you are a private paying patient, you can get into any facility you choose, so long as they have space and are happy to have you.
  
  I confirmed this with the MH Nurse.
  Yes, she said. If he is privately paying, you can do that.
  Eyebrows shot up 'Really', then knitted together with determination. That is what we did.

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.