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.

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.

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.

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.