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.

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.

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 Spent Christmas Day With The Family

Dad spent Christmas Day with the family.   It was the right place for him, because Mum and Dad have always spent Christmas Day with family.  Mum was determined this Christmas was going to be no different.  All reports are that everyone had a good day. 

There was cricket in the back yard.  Lots of presents and lots of food.

Here are some photos:



A little bit of overwhelm perhaps?

 

Present time



I think he likes it





Having a closer look

  

Enjoying the grand moko



Foot massage - Definitely needed after busy Christmas Day

I have to say I was a little shocked at some of the photos.  Dad is looking frail.

Even if Dad did cry his way through some of it and slept through another sizeable portion, along with Mum who is buggered from travelling between Auckland and Northland so often, that's not what's important. 

What's important is that, by all accounts, with Alheimers or not, Dad enjoyed his Christmas Day spent with the family.

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.

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.