Richard fell again yesterday.  On the concrete.  Heard him moaning.  He was going to roll out the wheelie bin and tripped.  He walks like a catwalk model on quaaludes, pigeon-toed, one foot crossing over in front of the other.  And of course he shuffles.  It's a wonder he doesn't fall over more than he does.

As for the BP, even with the doubling the dosage (1 full pill twice daily as opposed to half a pill) it has hardly made a dent.

The scary thing is, well, one of many scary things; if he falls and breaks his hip it is likely he will not come home again.  Even if he only injures himself slightly with a good chance of recovering I cannot visit him.  If he is moved from the hospital to a respite facility because of the covid  19, no visitors are allowed, not even spouses. 

I tried to impress upon him how important it is to be mindful of every step.  Told him to pretend he had an echidna attached to his balls or that he was  a sumo wrestler, anything to get him to spread his legs a bit when he walks.

This morning went early to the store to avoid crowds, then out to the horses and home again.  He hadn't moved in all that time.  He was ice cold.  The windows were closed and although the day was warm it was still icy inside.  Got him to go outside and thaw.  He didn't move again until lunchtime.  Now he's gone to have a nap.  If he doesn't get active soon, the choice will be made for us.  Showed him the booklet brimming with gentle exercises he can do to remain active and 'supple'.  He said he'd start tomorrow.  Why tomorrow, I asked.  Need time to get my head around it.  What difference in your head between today and tomorrow?  None. 

I left then.  I've done the nagging bit.  When he was compos mentis, when I saw the writing on the wall, I nagged to get him to exercise, to eat better.  I nagged diplomatically, quietly, encouragingly.  It only drove a wedge between us.  So today, rather than repeat history, I left him and came in here to read emails.  He was a self-starter, a motivated person in everything but looking after himself.  Nothing has changed.   Not even my familiar frustration that he won't do what I want him to do. 

So if he isn't totally 'with it' anymore, he is still, in character, the same.  At some point I just have to leave him to it.  I'm scared shitless he will fall and then he will go and that's that.  Brings tears to my eyes even thinking of it.  

Saw our neighbour yesterday.  Told him of Richard's fall, how I almost couldn't get him up again.  He said, next time ring me.  He builds movie sets on the Gold Coast but with the virus his work has finished.  He's a big strong German and he's close. 

Trying to get a walker without wheels.  The hospice store is shut.  Might have to go to Tweed to buy one but have put the call out on the local FB page.

What a glorious autumn day.  Air so clear you can cut yourself on it.  Technicolour colours (watched The Red Shoes again, noted how enamoured the cinematographers were with Technicolour - everything is so vivid!).  Decided after chores I really must do something on the drawing languishing in the studio/shed. 

Sashayed down to the studio and  took a good hard look.  Because of not cleaning since Art in the Shed was cancelled, the daddy longlegs, and other fleeter, creepier, LARGER spiders have moved in.  Discovered mold growing on one of the tables and, more worryingly, the wall below the sliding glass door is rotting through from the rain coming down the wall rather than going down the gutter - the roof pitch is too steep for me to climb up and do anything about it.  Looks like lots of $$ - but just can't deal with it now.  Will have to wait and hope the glass door doesn't collapse through).  So I cleaned the studio as if everyone was coming; vacuumed, wiped down the tables, cleaned the toilet, cleaned the kitchen.  But it was only me, me and Mikaela - who looked in vain for her artist friends to come and give her a pat.  When it was all spiffy and the spiders had either been sucked away or chased back into the shadows, had a look at my work space.  Completely unorganized.  Pencils mixed up with pens.  Erasers everywhere.  Reference books and pictures sprawled on every flat surface within arms reach.  Pastels tumbled in with charcoal.  How can anyone work like that...well, I do.. until I get sick of spending more time looking for something than actually drawing. 

Afterwards made a cup of green tea, put Joni Mitchell's Court and Spark on the CD and selected an 8B.  Worked until lunchtime - about 40 minutes but hey, it's a start. 

Upped Richard's dose from half a tablet to full.  Not a bit of difference in his afternoon BP.  Will leave it there until consulting, via video, with the doc.  Not his usual doc as he's away on holiday.  Am quite amazed he's not fainting daily.   No wonder he has no energy. 

Tomorrow, as Coles has imposed a customer limit, plan to leave as early as possible to get supplies before the rush.  Then head out to do the horses.  Getting excited about moving them.  Dug out their feeders, washed the spiders out (yes, spiders there too), made up enough feed to last until Thursday when I hope (HOPE!) everything comes together and they are in their new home.  Pick up the key tomorrow. 

With daylight saving trying to work out how I will do everything I want and/or must do every day.  So how can I find an extra hour to nip down there and feed them.   It's a given.  It's a must.   Actually I look forward to it.  Grooming, listening to them eat, it's all somewhat soothing, even meditative.  And of course, they smell delicious!  Almost as delicious as galah breath.

Was thinking that the other day, how many people have experienced the pure olfactory bliss of galah breath?  I am one of the lucky ones.  Thank you Marvin and Fern and Grevillea.  I am truly blessed.

Well, dutifully taking the BP 3 times a day and it ain't good.  Even with the drug, it's low.  Systolic 107 before he stood up then 89, clearly illustrating the danger he's in from 'postural drop'.  Tempted to up his dose but will hold off until the appt on Wednesday. 

Not sure if I can make the appt.  It's via the mobile, but can still email through the BP stats and state the case the dose should be increased.  Wednesday we might be moving the horses.  Waiting on others for information.  Quite frustrating.  We sold the float and truck so am dependent upon others.  Another lesson in learning trust and most importantly, patience.

My card this morning read:  Surrender and breathe.

My motto when things get a bit much.  I draw that card  fairly, significantly, often.  Duh!

It's funny how old lessons come back to remind you of things you haven't mastered.  When Mom was sick and dying, I was so sure love and positive thinking and praying and WANTING would make her well.  But of course it didn't in the end.  Her life journey was her business, not subject to the desires of her daughter.

Same with Richard.  I am more accepting than I was, but still have this tendency to want to 'make' things be as I want them to be rather than as they are.  But being married and respecting someone's sovereignity over their life is part of the respect one has for one's partner.  Even if that partner is 'not of right mind'.

 It's a strange dichotomy.  Richard is still Richard despite being much reduced in cognitive scope.  He is no less a man or a human than he ever was.  In fact, in some ways he is more himself than he has ever been.  The masks he wears, like we all wear, are being slowly removed as 'surplus to requirements'.  He, while being gentle and soft with me and the animals, has always been a man's man.  Very male, tall and strong.  Those words don't describe him any more.  He is stooped, physically weak, and often the vulnerability and  confusion is visible on his face.    In needing his needs met, in releasing societal strictures about what is normal and what is not, he is more nakedly human than he has ever been.  It's a sort of weird privilege to witness this. 

Fludrocortisone acet.  That's the drug prescribed to lift Richard's blood pressure.  He says he already feels more energetic.  Was supposed to take his BP 3xdaily from Wednesday arvo but had no batteries and then forgot to get batteries.  Got them today; first BP, systolic 107.  Not perfect but was taken after lunch.  Will take again later, sitting and standing.

Horses got their second Hendra vaccination today.  Didn't tell the 'landlord' I was coming.  Suspicions confirmed.  Four piles of hay.  He has no hay of his own.  Balthazar wasn't separated out and so was hunted away from his food by the landlord's horse - explains perfectly why Balthazar looks so seedy and why I'm payging for 4 bales of hay a week.  If there was grass in the paddocks it wouldn't matter so much but the paddocks are mostly weed. 

Landlord came home while I was there.  I didn't say anything.  While I have 2 vulnerable horses there, I won't say anything.  It's his karma.  And, to be honest, you get what you pay for.  He didn't charge much so I didn't get much.  $140 a week in hay that helped to keep his horse rolling fat doesn't sit well however.

Will like having them 5 minutes up the road.  Nice little outing in the afternoon, perhaps with Richard and Mikaela while this lockdown is on.  They can wait in the truck or plod down the driveway while I get the horses up and feed them.  Plus we can drive around the corner and take a lovely walk over the river. 

Moving them next week.  Can't wait.  I am feeling quite guilty I let it get to this point.  Sure I can blame the landlord for not doing what he said he'd do (and what I pay him for) but the ultimate responsibility is mine.

Feeling much better now.  Weepy and weak this mornig.  Realize I have a problem with letting go of things.  I cling to things which mean nothing but which hurt my 'pride'.  I paid $500 to a solicitor because the doctor said I should seek power of attorney and enduring guardianship.  Richard had to sign a form giving the doctor, the same doctor, permission to divulge Richard's medical history to the solicitor....which he decided he couldn't do because Richard was too far gone to make a decision.  It still rankles.   We can't really afford $500 but we've had to.  Better now, but jeez, I obsessed about it.  Then stepping outside myself I realize I obsess about things a lot.  If someone disagrees with me or I've been proven to be wrong, outwardly I'm gracious and smiling and fine, inside I chew it over again and again and again.

So a wonderful newly discovered aspect of myself to be aware of.  Only got over the doctor/solicitor thing by deliberately and repeatedly choosing to think of something else.  So it is possible.

Indecision.  With the small albeit real risk of more falls with the use of Exelon, the drug which may help 'lift the fog' of Richard's dementia, I couldn't decide whether it was worth the risk or not.

But it's not about me.  It's about Richard and Richard wants to try it.  So decision made.  If there are significant detrimental side effects, we just won't use the drug anymore.  And there's something to be said about his confused, increasingly confused, mental state, contributing to his falls.  Perhaps using Exelon with the possibility of side effects will be balanced by the increased cognition of his body in space andn time.  He is so often 'not there'.

Doctor's appt today.  An ECG test on order of the specialist neurologist and then order the drug, which isn't kept in stock by the local pharmacy. 

Never thought I, who doesn't even have a doctor and whose last rub with the medical profession was when I thought I broke my foot last year and hauled myself off to emergency for an xray, would become so familiar with doctors and hospitals and medicare and chemists.   Cameron gently chided me for not having a doctor, for not having a 'physical' - although he didn't put it in so many words.  His thinking being that I must ensure I am in good health so I can take care of his dad.  He doesn't understand that my continued good health is my responsibility - certainly if I break something or have chronic acute something or other, I'll go.  But fear is the great destroyer, as far as I'm concerned (look at the results of panic and fear with the current pandemic!).  I am at my strongest when I am as far away from a GP as possible.

As for the pandemic which overwhelms the media, both social and otherwise.  I don't seem to have room for more than one 'situation' at a time.  We stay at home, comply with the self-isolation laws, catch the news once a day, beyond that ... I'm busy.

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.