RANT:  Jesus, I just sent the boys (men) and Richard's sister and Helen, a trained nurse, an update about Richard and his weight loss and what is being done about it and I get another fucking email about looking into antidepressant drugs and supplements and low sodium/iron levels and assessment by a primary care team.  What fucking team is that?  

RICHARD is DYING.  This is the reality of Lewy Body Dementia and Alzheimers.  Death is the final result arrived at by the Primary Care Team. 

Again, I have deleted the fucking email.  I am so angry I could spit.  THE END is inevitable.  Why play this stupid game that, his life can be prolonged in a meaningful, and I mean, MEANINGFUL, way with these nickel and dime 'remedies'.   

Helen wrote back and said thanks for the update, good to know.  Nothing from Anthony.  Nothing, so far, from Noelene although I expect Noelene will write soon.  It is her birthday today and believe she is entitled a day to be jolly rather than dwell on the fact of her brother's disintegration.

I'd like him to be reviewed and some opinion/feedback re my points raised on the 04/03... per below

"I've given some thought to Dad's deterioration and certainly I understand that there's a disease process at play, however

I think it would be pertinent to consider reversible causes

1. Depression.... common in our aged population, an anti depressant may be beneficial.
2. High caloric supplementation....
3. Medical review re this decline.... this may identify a treatable cause i.e. pain, infection, low sodium, low iron.... etc etc etc.
4. I understand that the facility staff are looking to encourage increased physical activity." 
   

The above is from Cameron, a critical care paramedic.  Who is perhaps assuaging his guilt for his lack of interest earlier by being too interested now  I don't know. 

So my silence will piss him off but I refuse to do that shit.  There is NOTHING reversible about LBD.  The medicial review is ongoing as he's in the care of his longtime doctor, who is regarded as the BEST in this area, and the RN's.  And he hasn't enough marbles left to be depressed.   Oh it just shits me no end.

End of Rant.

 One of the nurses from Heritage rang yesterday.  Richard is down to 73kg (160lb).  Richard is 6'1".  Coincidentally the night before I lay awake worrying about his weight loss and difficulty in eating.  I buy him chocolate treats.  I ask if he wants one, but he won't open his mouth.  He doesn't understand. On a good day he'll pick up the treat himself but forgets to take it to his mouth.  On a bad day - nothing.  If I can get him to take it, pressing it gently against his closed lips while repeatedly asking him to open his mouth, getting him to take a second one is easier.  The nurse will talk to Richard's doctor and the dietitician but what's happening is...

He's dying.  He has LBD.  It's a natural progression.  Loss of the ability to do anything, loss of interest in food, weight loss.  Dying is natural.  But oh hell, this is tough and will get tougher.  Have already vetoed the use of a nasograstro tube to feed him.  Watching him starve as he dies - who wants to watch a loved one do that? 

 Visiting him mostly consists of me applying moo goo to his psoriasis, wiping gunk from his eyes if there is any, putting the drops in, then sitting quietly holding his hand while he sleeps.  Can't wheel him around the gardens anymore as the bath chair is too big and unwieldy.  Get him outside to the garden but that's all I can manage.  So we sit.  If he's awake I point things out to him, a butterfly, a bird, a flower but his eyes don't focus.  With the rain I've shown him the radar on the phone - which normally he'd be impressed with as the rain is so pervasive - but again, he doesn't look, just gazes in the middle distance.  Often I'm sure he doesn't know who I am.  Now it's getting to the point where I wonder sometimes if he's even aware I'm there. 

I dreamed of a house last night, a new 'used' house.  Under the floor boards were lovely glass teapots with porcelain handles, old blankets.  I had a bed in the house.  I was cleaning out the house, making it ready for me to move into.  Other people were there too.  There was a man.  He cradled my face in his hand.  I felt safe.  I felt cared for.  Then there was Richard in his bath chair.  I thought he was dead but I tickled his foot and it jerked.  Then I felt guilty.

And it's still raining.  Didn't go see him yesterday and won't go again today.  The Byangum Bridge is under water.  Have had over 7 inches in 2 days.  Seven inches on ground already saturated.  The water has no where to go.  Enormous floods down south.  Evacuations, property damage.  And then there are the animals. 

 I'm stuck.  And I'm Sad.  And it's rained every day this month.  But the washed green leaves are pretty.

Being stuck.  The book has been limping along.  I don't have writer's block.  I want to write.  I just don't know how to write the ending.  I see a couple of scenes but have no idea how to get the characters from point A to B and C and finally Finis.  Some ideas came while walking yesterday and a couple of them can be incorporated to round out some of the latter scenes - but no definitive ending in sight.  

Yesterdays 500 words were the hardest I've written.  Like walking in the dark; hands out, eyes straining into the blackness, feet shuffling forward and you still miss the door handle by a couple of feet and have no idea where in the room you are.  

Yes, that's why I'm blogging; because I've no idea what to write today.

On being Sad.  Every day seeing Richard.  He is so far away from me.  He is more connected with the staff than he is with me.  Even getting him to take a chocolate.  He didn't know to open his mouth or take it in his hands.  I  don't know what to do and after putting the drops in his eyes and the Moo Goo on his skin i just sit and hold his hand while he sleeps.  Then I come home and make coffee and feel the tears prick my eyes.  Every day.  It's like a Clayton's Grief.  A grief that is and it isn't.  No end in sight so I compartmentalize because I have to but it never goes away.  But I cry often about everything and anything. I know this long term background sadness affects me.  Inertia, tiredness, insomnia.  But no use whinging.  Just have to keep going.  There is no alternative.

And then there's the rain.  It's so unceasingly wet mold is growing on top of mold.  The ground cannot hold any more water.  Started digging a hole to plant a fig tree and it has been full of water  for two weeks.  Byangum Bridge will probably go under tonight.  Told Richard I may not see him tomorrow.  I don't think he understood but I tell him anyway.  The birds sit in the rain unmoving.  Everybody waits.  I wait.  Mikaela and I walk regardless.  Sometimes I'm just damp as I don't use the umbrella and it's a misty rain.  Other times it's pelting and we slosh through water coursing down the bitumen.  Mikaela doesn't seem to mind.  She gets a towel down then dinner when we get home.  I get dry clothes.  And the coziness of red wine while the rain continues to fall.  

Kind of matches my mood anyway. 

 Well, not much has changed.  He hasn't known me for a couple of days although if he has a 'good' day, I'm sure he'll remember.   Told him yesterday his son is coming to see him on Wednesday.  Usually that news would perk him up but his face remained impassive.  Do you know who Cameron is, I asked.  A little shake of the head.  So I told him of his sons and his grandkids and me.  And didn't cry.  Did that later.  

After my email to Cam about the change in Richard I got a reply detailing all these things that could be done or investigated,  even to antidepressant drugs.  Made me tired reading it.  After all this time, he still doesn't get it - and he's a critical care paramedic.  His dad is on the way out.  No amount of tweaking with drugs or supplements or extra iron or sodium will stave off the inevitable.  

And truly, why does he want to prolong his life?  From the moment he wakes up to the time he goes to bed, he has no freedom.  He can't stand or walk, brush his teeth, shave or wash his face, he can't bathe or roll over in bed, he can't blow his nose or wipe his bum.  Is that the life Cameron wants prolonged?  Richard is clean, dry and pain free.  He is safe.  I say let him go.  The sooner the better.  If you described to Richard at 60 the life he could look forward to at 73, I am certain he'd say, let Nature takes its course.

Still writing but finding it hard.  Not sleeping again.  Even had a short nap yesterday, first time in years.  Know this too shall pass and brighter days will come but despite internal pep talks about how fortunate I am to be who I am where I am and how I am,  things look pretty grim. 

 He's fading, slipping into a world of dreams.  Maybe he's whole there.  His hands move, his feet shake, he jerks, his mouth makes shapes.  

He didn't know me today.  Normally I don't ask.  I asked.  He gave a tiny shake of his head.  He understands but can't be understood.  Speech, understandable speech is beyond him.  I try and get him to take a drink as his voice is deeper, clearer when he moistens his mouth but after today I don't think I'll try.  It went down the wrong way.  It's done that before - too often - but this morning he gurgled.  It would be a small step from a little choke to pneumonia.  

I asked him if he wanted to leave.  Told him it's okay if he wants to go.  He's not near death.  It's not that but he has no life.  Everything is done for him.  He can't turn over by himself.  Can't get in and out of bed.  Can't walk, can't shave or brush his teeth or wipe his bum.  His eyes are mostly closed now.  He opens them when I wheel him in the bath chair - it's called a bath chair this big cushioned bed on wheels - but soon drifts off again. 

 Nabina, one of the RNs, asked how I was doing.  I began to cry.  Told her I'm fine until someone asks me how I am.  

I cry easily now.  Not sleepiing well.  Dark circles.  Tired.  Best time of day is the writing for I escape into another world.  

Like having this dual life.  In the writing life I inch the book forward.  Also see major adjustments to be made to make it a better book, mostly with Tanguy - she has to change herself, not just have external changes imposed upon her.  Finally saw how that could happen - not a deep subterranean psychological change - it is a young adult book after all - but a worthwhile change in learning self-acceptance for at least one facet of herself.

 This isn't a 'worthy' book.  'Worthy' books, and I read a few while in the bookclub, can be boring.   I'd rather it was a good read - or at least as good as I can make it.  

Isn't it typical how life can be so exquisitely satisfying on one level and desperately awful on the other? 

 

 When I arrived at Heritage today, Mikaela in tow, I couldn't see Richard.  He's a head taller than anyone there so even though one of the staff motioned to the group gathered in the living room, I assumed they'd got it wrong.  Trotted down to Richard's room.  He wasn't there either nor was he in the tea nook so back I went to the living room.  One of the staff pointed him out to me.  He was in one of those thickly padded saloon chair bed things on wheels, the contraption where those who are really bad wind up.  

Tracey had tried to head me off at the pass, saying Rachel wanted to see me.  She found Rachel but Rachel was busy with another client.  It was all in Tracey's eyes but I didn't heed the difference.  I just assumed there'd been another 'incident' where Richard grabbed one of the staff by the arm which he does if he feels threatened.  But no, they were trying to warn me of the change before I saw him.

The change has been made because his psoriasis has flared up again and the skin on his bum is fragile.  I understand.  But they have also changed where he'll be fed.  He's moved from the regular dining room to the room where they hand feed them.  I've had trouble feeding him too, having to demonstrate what to do with food by eating myself.  

And then there's the sleeping.  He sleeps a lot.  Yesterday I only stayed with him for a short while as he couldn't be roused.  He'd had another day like that - where he basically sleeps through bathing and shaving and breakfast.  

The major causes of death with LBD patients is Failure to Thrive and pneumonia.  He's failing to thrive now and with the bed thing, even though it can be put in a sitting position, it seems pneumonia has suddenly become a possibility.

I've written to the boys, his sister and Helen about these latest developments.  And I've had a good cry.  Well, several good cries.  Tears in front of Richard too but he was too sleepy to notice.  The only time he perked up was when I said drug squad.  The police helicopter hovered very low over the property today. Apparently this is the season when marijuana crops are visible so they  employ helicopters to look for them.  This property would be ideal - but all they saw was a puzzled woman and half a dozen freaked out galahs.

Don't do drugs anymore but if there was a time where I wouldn't mind losing myself for a bit this would be that time.

 Teary.  Don't feel like writing.  As always went to see Richard.  He was asleep, deeply asleep.  Didn't respond to touch, the bedside light or his name.  The nurse said he barely stayed awake while they bathed and shaved him, that he only had a few spoonfuls of breakfast.  Sleeping more during the day is part of LBD.  That and the hallucinations and loss of memory etc etc etc.  

Richard sleeps much more than he used to.  Dozes off while I am with him and am silent for more than a minute or two.  Often I arrive and he's asleep in his chair.  Yesterday he made a lonely figure parked in front of the oversize tv in the communal living room.  Rows of empty chairs around him.  The others were playing a word game in a different section.  Richard's dementia keeps him from socializing.  He can't be understood nor does he understand.  

I try not to think what we've lost.  But sometimes...I miss him so much.