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.

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….

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.