Lewy Body Dementia

The verdict of the specialist we went to see Wednesday last.  Reading up on it, so obvious.  The symptoms describe Richard perfectly. 

He fainted that night, again the next morning.  Off to hospital.  Stayed for observation a day and a night and half a day.  All good.  All vital signs good.  Same old thing; a drop in blood pressure due to Parkinsons and the Madopar.  The specialist gave us a script for something which might lift 'the fog' of dementia.  One possible side effect, a drop in blood pressure.

One of the leading causes of death in LBD sufferers is falls, from which a cascading series of physical events occur (a friend's sister, an Alzheimers patient, died from a broken arm).  The other is pneumonia from aspirating food/liquid.

Richard had to return to bed this morning, very tired.  He's still limping from the first fall (I caught him the second time, cushioned his fall...I was the cushion).  His colour is not good.  Despite my yearning to have 'him' return to me with the use of the new drug, don't think I can chance it.  If he was 5 foot nothing and 50kgs, no worries.  But he's 6' and 78kg.  When he falls, he falls hard and far. 

The usual time from diagnosis to death is 5 to 8 years.  It can be 2 to 20.  Richard has been deteriorating more quickly.  I live with him all day every day, the deterioration should be negligible.  But it isn't.  I see it. 

I'm scared.

I'm also a better carer than I was.  I'm learning.  I'm loving more.  There is a bittersweet tenderness in this long goodbye. 

Can't settle to anything.  Should be writing, practicing guitar, doing yoga - and I will ---- perhaps buzzing too much from listening to Allman Brother's Jessica.  Should pull that song out and play it whenever I'm feeling down.  Don't think depression and that song can co-exist in the same cranium.  It is the most upbeat joyful instrumental.  Now listening to a guitar duet of Debussy's Arabesque #1.  Beautiful and joyful in an entirely different way. 

But I'm feeling pretty good anyway.  We've had 5 inches (131mm) of rain in 24 hours.  It may not revive the rainforest trees already dead from the prolonged drought but it will certainly save many others.

The fires are still burning in southern NSW and Victoria.    I wrote to my cousin on January 5 about them, this after the NYEve fires:

They are in the south of the state, no fires near us, but a thin smoke haze has returned.  The fires are so bad....cataclysmic, unprecedented, Armageddon...pick a word! - the haze has reached New Zealand.  The amount of land burnt is almost the size of West Virginia.

So we are okay - only 2 more months of fire season to go!  - but of course we aren't.  It must be akin to the helplessness those caught up in war feel.    I alternate between swearing at the government and weeping for the half a billion animals that have died - and the many more that will die from their injuries and starvation.  Yes, I am sorry people have died - but they had a choice.  They could leave or stay and try and protect their property.  Almost all those who lost their lives were trying to save their property.  One guy had a heart attack helping a mate.   Sad but still a choice.  The animals don't have that luxury.  We have inflicted this  upon them.  All because we are wedded to coal and gas, because we are selfish, greedy and apathetic.   I'm sick with digust.  I'm not sleeping - and it's not just me.  Everyone I talk to knows someone who lives down there, who's been affected by this.  They do the same as I, swear and weep, lie awake at night grieving.  Have given $$ to animal welfare organizations and will give more but am so helpless.

There might be one good thing coming from this.  We have been body slammed into the effects of climate change.  Scientists predicted this 20 years ago.  I remember!  Hotter, drier with more and bigger bushfires.  Well, they were right.  And our rep, Angus Taylor, at COG25 in Spain tried to get other nations to agree to fiddle the books so we could 'carry over credits' to reach our 'targets'.  It's tragic.  And our Prime Minister famously carried a lump of coal into parliament (when he was a parliamentarian) and asked what everyone was so afraid of.

We've got exactly what we deserved - a ex-media boffin who swans off to Hawaii while Australia burns.

So sorry about the rant.  But must admit it felt good to type this out (hitting the keyboard really hard!) <g>

Like having a good cry, I guess.  Exhausting but necessary. 

Didn't really want to write of it again.  We get used to anything over time.  I can't maintain righteous indignation, rage and grief indefinitely.  The small things insinuate themselves and eventually take precedence:  Richard hallucinating about a talking honey bucket, forgetting where his shaving kit is kept, being unable to open doors on his own - the small but relentless deterioration of a mind.  And me having to step up to the mark.  I shower him every day now.  We've got the routine down pat so it's okay.  Communication grows more difficult.  I prattle on about things and know he doesn't get most of what I say - suppose talking as though he does is part of staying sane.  He loses more words, tries to tell me things and forgets what he was going to say.  But it's okay.  It has to be.  There is no alternative.  Just trying to live up to the mark, being good to him and myself.


And still being grateful for my fortunate life.  And I am.

Well the Meezer's sick.  Came up with a paralysis tick, despite being an indoor cat.  Probably got it off Mikaela as she's on Nexgard.  They hitch rides on her but don't imbed.  I've picked up 3 so far this season from giving her hugs -- too irresistable not to.  Anyway, Matisse likes sleeping in her chair in the afternoon, the chair Mikaela sleeps in overnight.  So lots of time to fasten itself to his neck. 

Treated at the vet.  Tick serum is derived from the blood of tick resistant dogs (building up resistance slowly and consistently).  Some cats have a bad reaction.  Matisse did not.  What he had a reaction to is the spot on they applied just before he came home.  36 hours of thick ropy saliva - a more miserable cat would be hard to find.  While he's finally stopped drooling he doesn't want to eat.  I've been syringe feeding (force) since Thursday.  The weight has melted from him.  Thought his appetite would've kicked in by now.  Cats who don't eat for more than 3 days lose the desire to eat and must be 'kick started' to regain their appetite.  Not in Matisse's case.  Going to ring the vets tomorrow for suggestions.   Still have one dose (from Nairobi) of mirtazapine left. 

He's 15, close to 16.  He's not bouncing back.  Worried.

Showered Richard a few days ago.  It wasn't that long ago when I suggested I shower him he growled he'd move out before that happened.  Just answered a lovely email from Heather who wrote she'd been thinking of us, how she hopes we get the help we need  from the 'system'.  Have made an appointment with the doc to get a referral to Occupational Therapy for handrails, perhaps an addendum to the toilet, rails in the shower and whatever else they might deem necessary be installed. 

He's failing and the failing seems to be accelerating.  The day I showered him, he was mentally 'out of it'.  He falls into a daze while eating, sitting with a morsel of food poised at the entrance to his mouth.  The daze, if not broken, quickly devolves into sleep.  Now The Daze, should capitalize it as it's such a leading light in our lives, has appeared while he's standing.  Richard forgets how to open the doors, sliding glass and screen doors.  He forgets the names of his grandchildren.  He doesn't understand much beyond the basics - go here, eat this, stop that, do that.  Conversations which involve the simplest concepts are now beyond him.  We had two inappropriate urinations close together; a bed wetting (thank goodness for the Brolly Sheet!) and in the hall.  These mishaps cause him great consternation.  And I got cranky too.  The one in bed was due to his having a beer and a scotch.  Too much alcohol and he loses bladder control.  So when he woke me at 3:30 saying Holly Wake UP! I told him tough, he'd have to cope.  But of course I couldn't get back to sleep.  The other time, again waking me at 3:30, the magic time of night it seems, I was less than gracious on my hands and knees mopping up urine. 

I don't carry resentment, don't beat him over the head with it after the fact.  He can't help it really.  At the same time, I'm not going to beat myself up for being cranky either. 

His days are hard.  He has such a strong work ethic he feels he should be doing something but is unable to do much at all.  He washes the dishes, blows the hay from the truck with the blower, waters the plants, even watering the pots with nothing in them, sweeps the deck. Other than that he sits on the couch in The Daze, then complains because his ankles are swollen.  Well, do something! I rail.  Sweep, cobweb, pull weeds, do your exercises (sitting and rising from a chair without using his hands).  Yes, he says, I will, then forgets what he was going to do between the couch and the door.

Thank god he doesn't remember how he was or he'd be pathologically depressed.  When I was washing his privates, when I clip his toenails, when I tell him he doesn't need to put on a pair of underwear as he's already wearing a set, when I dress him, if he saw these things as he was, he'd be mortified.  Now he's mostly meek and grateful.

He's not doing the best job when he showers so there'll be a time soon when I can edge my way into that job permanently without hurting his feelings.  Ditto teeth brushing.   And shaving.  Next will come bum wiping.  That will be a tough one.

On a good note.  Matisse is off the prozac.  I'd ordered a batch, it got hung up in the depot so he had to go without for a few days.  What a transformation!  He's calmer, happier, hasn't sprayed, rarely wails at night, is still affectionate, that hasn't changed, and he doesn't smell like drugs or have greasy ears.  The downside is it was obviously an appetite stimulant for he's not eating as much (why can't there be a happy medium?  On drugs he ate too much. Off drugs not enough).

I didn't reckon on being this  lonely.  Lonely as opposed to alone.  Being alone is a delightful state of being.  Yesterday morning I was alone.  Took the Skoda in for a service, walked across town and across the river to have a coffee at the Riverview.  I had a book, the river, nesting mynah birds and water dragons for company.  I was alone at a table on the verandah and perfectly happy.  I read a little, watched the river and river life for a little, read some more.  An enjoyable hour.

Picked up Richard to get the second car serviced.  We walked to the RSL (air conditioning a necessity) for lunch.  Watched Richard struggle with his meal, tried to help him to use the knife without interfering too much.  Couldn't read the book (rude), made small talk (lots of white cars, aren't there, how's the fish, let's get this napkin in your lap), watched traffic and felt lonely. 

I'm not the best conversationalist but there are so many things of interest to discuss yet there is no one to discuss them with.  I see the women on Thursdays, the Writer's Group for 2 hours on a Friday and Nick the guitar teacher every second Wednesday.  Sometimes I run into people while walking - or talk to the guys at the feed store or the women at the checkout - but that's just chitchat.  I miss the companionship of conversation. 

Am a bit chary about complaining as what do I have to complain about in the grand scheme of things when I have a roof, food, safety, interests, etc.  On the other hand, it wouldn't be honest to pretend everything is peachy and I am miss pollyanna perfectly happy.  I'm not. 

Being relieved and grateful for the hour or so when he takes a nap - I wish it was otherwise.  Being aggrieved and out of sorts when there is a long spate of essential micromanagment because his memory fails him and he's lost his bearings.  And the fight to remain patient and loving.   How difficult that can be and I often fail, hearing the impatience in my voice. 

Even small talk becomes more difficult as Parky robs him of his ability to speak much above a whisper and the dexterity toform words clearly.  Then of course dementia steals his vocabulary as well as his memory.

It's a shit deal for anyone.   Richard doesn't deserve this - and whingy me, neither do I.

Hard to settle to anything.  NSW and southern Queensland are on fire.  Smoke haze so thick Mt. Warning, Uki and The Sisters are just eerie shadows in the gloom.  Over 100 homes lost, 3 people dead, more injured.  The nearest fire is at Nightcap Mountain National Park - so not near but it was in conditions exactly like this the fire at Terragon/Clarrie Hall Dam/Palmers Road burnt the mountain we can see from our deck - so as the crow - or embers - fly, not far.  And, as the conditions are just the same and will worsen tomorrow, I worry.  Useless I know.  Not helpful.  Can't discern 'new' smoke in the air as it's all smoke.  Lots of helicopter traffic to-ing and fro-ing. 

It's a tinderbox.  Our rainforest is so dry, trees are dying from lack of water.  Rainforest needs rain and lots of it.  We've had so little.  The ground crackles beneath my feet from bark and leaves.  The scrub turkeys dig and scratch and find not much - the grubs and earthworms have either died or dug deeper.  Have a bucket of water out for wallabies, turkeys and big birds like currawongs and a smaller birdbath for the wee birds.  Saw the first bird use it today while making up the horse feed, a Leuwins Honeyeater.  Now that one has found it, others will too.  Putting out fruit leftovers for those interested.  Always gone in the morning, save for mango pitts and watermelon rind. 

Lay awake last night listing all the things I must take if we have to leave.  With 7 birds, 3 cats, 1 dog and us, it won't be easy.  At least we have the caddy which should hold everyone.  Can't trust Richard to drive anymore although in an emergency maybe it's better to have a try.  The cages for the birds, the cat carriers, the food, the computer tower and guitar, meds, the red case with important papers and some underclothes and toiletries - guess that would be enough.  No art materials, no books, no journals.  We have one road out of here and as the house is  surrounded by bush and we're on the side of a hill, we wouldn't have a chance.  Actually, if it was just me and the animals and Richard were safe, I'd have a go.  There's a cleared space in front and behind.  There's ample water in the fire tank (unlike the house water tanks which are getting perilously low) so if I could access the fire tank water with multiple hoses, block the gutters (which I fortunately cleared out a month or so ago) and soaked everything - perhaps the house could be saved.  It's the ember storm - travelling up to 12km - from the main fire which is the danger. 

But of course, I wouldn't take the chance.  One woman has already died trying to save her house.  The other 2 were caught in their car.  What a dreadful way to go.  Richard and the animals need me so the responsibility to them is greater than my responsibility to the house. 

Ack.  To even be thinking these things.  Like I'm going to attract a bushfire by thinking of it all the time.  One attracts what one fears. 

But I feel so helpless.  Can't save the animals being burnt alive, can't feed the ones that are starving, can't make it rain.  Sure there is a lesson in here somewhere.    Like don't stress about what I can't control?  Something like that I suppose.  Hope next time I write here it's to complain about all the damn rain and the mold and high humidity and why I always have to wear gum boots coz it's so wet.

Guitar lesson today.  Still abysmal but marginally less abysmal than before.  Perhaps rather than abysmal it's bysmal.   Nick helped me with tempo, which, because I struggle with note finding - specifically D! - was good.  Some of the music, no problem, others, where I find the fingering to be tricky - tempo goes out the window.  Anyway, was pleased a few pieces played well - and the ones which pose problems, I have a solid foundation with which to practice.

Hot here today.  Should be walking now but too hot for Mikaela.  Have to get her little wading pool out and filled.  Trying not to use water until this drought breaks.  We had 20mm a few days ago but no follow up rain.  Everything is still green here - after all we live in the Tweed Valley - but it's a false sense of security.  The ground is quite dry, even the Tweed River is down.  Surely the rains will come.  Last year in October we had 300mm!

No writing today as after lesson and lunch picked up Richard and went shopping.  Hard on him.  He is especially tired after a day at the Men's Shed.  He's been struggling the last few days, quite out of it.  We had some hygiene issues yesterday and after boasting how I'd been keeping an even keel and just dealing with it and moving on, I got angry and frustrated.  No excuse but he argues.  I ask how can we deal with this, what would best help you to do the things that must need doing and if you can't do them, how about if I help?  Nope.  He says.  Draws the line in the sand.  As do I because we can't have the issues we had yesterday.  It's not just me being prissy.  It's hygiene.  E. coli etc.  Finally I lost it and as he argued I said, 'Go away.  I mean it.  Go away!'  And then of course feel like a complete shit because he can't help how he is and it's up to me to be the adult.  Sigh.  It's a process.

All is well between us today.  I do apologize after I've calmed down and he graciously accepts my apology.

On a lighter note.  We've had 3 visiting cockatoos today.  Wanted to attract them to entertain Richard.  He misses Caruso still although he realizes releasing him was the right thing to do.  Knew there were some newbies in the area for I saw a resident cockatoo trying to drive off one of the interlopers.  The newbies have been quite vocal too.  Don't know if they've come from out west where the drought drives them east or if they are released birds.  The big male is either very bold (although cautious) or has known humans in the past.  He listens attentively when I talk to him.