Helen came to visit yesterday which was a real joy - to Richard and to me.  Didn't know patients are allowed only one visitor a day.  Due to Helen's charm (and normal temperature!) we visited him together.  Took him outside in a wheelchair, sat him in the sun.  Colour good again.  More with it although I fear the whispery voice is a permanent fixture.  No pain evident.  He will be in good shape to be moved this week - physically at least. 

Helen didn't warn she was coming so it was fortuitous I was there at the same time.  B Movie comedy in taking different elevators at same time to find one another.  Twice.  Helen's a tonic. 

On the other hand, my poor country is going up in flames fueled by the ego of a crazed orange man  wearing a red hat.  Nothing would please him more than  a civil war.  People continue to die from a virus probably let loose in a 'wet' market in China, the earth struggles to breathe as we wipe out forests but rather than pull out all the stops on a planetary emergency he flattens the curve on his golf score. 

There is nothing saintly about me.  I get angry.  I'm impatient.  I take short cuts.  I think unkind thoughts.  I can be petty and mean.  In short I'm human but even with my weaknesses and faults, I think if I were in a position of power as Trump is I would aim to rise above my shortcomings and endeavour to lead the country (and by example the world) out of the mess it's in.  Wouldn't having that much power inspire one to do better?  Be better? 

Calmed down now but have spent most of the night wondering how I was going to live.  Received the costings for Richard's stay at Heritage and even with the government's help I have about $180 a week to live on.  From that I have to save enough to pay rates, house insurance and car registraton, insurance. 

Have decided to sell the Skoda.  That will help and I can't justify having two vehicles now Richard won't be coming home.  It was lovely to have a quiet comfortable car for long trips (long being 30 minutes to Tweed and the occasional trek to Brisbane).  The Yeti is the most luxurious car I've ever owned.  It only has 62,000km on it even thought it's 8 years old.  But it has to go.  The serviceable VW Caddy; noisy, rough and with the lingering smell of cigarette smoke from the previous owner will have to do.  But it's a tough little car, reliable and hardworking, great for horse feed and Mikaela.  And it gets from point A to point B and that's all that's needed.

Richard was sitting in a chair yesterday, brighter and more with it.  He kept asking how could he get out of there.  Told him I couldn't look after him - and it took 2 burly people and a walker to get him back to bed.  I feel for him.  He's sick of being sick, sick of the hospital and because he has dementia - no one besides the nursing staff is reaching out to him.  Mr. Genial Sociability is isolated and lonely.  Even though he was having a good day - and that residual guilt bubbled up because he wasn't home with me - I know he isn't safe at home.  Have yet to tell him he's going to Heritage Lodge next week.

The boys still haven't been to visit him.  Anthony was going to research coming across the border.  One click and I find there is no problem and never has been for a Queenslander to come to NSW and return again.  The problem is with NSW residents going to Queensland.  But that is his lookout.  I'm not in their good books anymore.  Cameron emails are civil and businesslike, no saluation, no more 'Love, Cam'.  Ah well. They still don't believe their dad is as bad as he is and think I'm shirking my duty.  But as a wise actor once said, what they think of me is none of my business.  Thanks Anthony Hopkins.

I thought it would be easier when I wasn't looking after him and in a sense, because I know he is safe, it is.  But Jesus, this is tough.  My lovely loving best friend, companion of my heart, disappearing down a tunnel I cannot follow. 

One long long slow goodbye.   A grey morass of grief, an endless sea, flat calm, no horizon, no sun,   Death by nano degree.

Yesterday's visit.  Apathy.  He just watches everything through hooded eys.  Didn't care I came, didn't care I left.  The physical robustess beginning to wan.  His skin with the pallor patina of the sick.  They got him up yesterday to shower but he was a danger to all as he wouldn't take direction. 

I talked and talked and talked.  Showed him pictures of Natalia, spoke of his kids, his siblings, the horses, Mikaela, the weather, anything to give him a fixed point on which he could ground his attention and reel himself back to reality. But it didn't work.

The one good thing of all this, he no longer wants to come home so he's not sad.  He just doesn't care one way or another. 

This is his broken hip.  This is his pneumonia.  Richard isn't going to recover from this, whatever 'this' is.  The doctor, an oriental woman without an apparent ounce of warmth or empathy, said we can do nothing more for him.  Pain relief and rest, that's all.  We won't do surgery.  We won't intervene (because he is 73, has LBD and Parkinsons?).  Best thing I can do is move him to a home.  The sooner the better was left unsaid.

The male nurse said they suspected something more sinister - and they seem to have taken more scans which still show nothing.   Why did he say that?  I knew when talking with this doctor I would get nowhere.  She was stone.

On the other side of the coin is the social worker, Katy.  A bundle of energy and warmth who goes the extra mile.  I met with Mary who did the second ACAT assessment, a formality. She didn't ask Richard any questions to gauge his mental acuity.  I signed papers which confirm him as needing High Care Permanent Residency rather than High Care Respite.  And, due to Katy's enthusiasm and love of her job, there is a good chance Richard will go to Heritage Lodge.  I contacted Heritage before because it is regarded as the best home in the district.  A friend of a friend's motherr was cared for at Heritage. She had LBD.  Turns out she was a long term resident who developed LBD so they just carried on.  They don't have a dementia unit.  But as Richard is immobile, not abusive, nor loud they will take him on trial. 

This is the universe looking after us.  He will be in the best place and the best place is in town so I can visit every day.

Just looked up broken hips.  Wonder if they did an MRI.  I'll ask today.  I'll ask one of the nurses - don't think I'll get anywhere with the doctor.  And if they haven't done an MRI I'll request one. 

The greatest danger to Richard now is immobility.  The doctor pointed out he was extremely constipated - rather accusingly I thought.  Him being constipated is clearly a result of lying on his backside and change of diet.  I teased him last week of beiing like a horse; pooping copious amounts frequently.  Our diet, full of fibre and raw stuff... constipation is not an issue. 

Don't know why I didn't put two and two together before.  Because it didn't have the name broken hip?  If he is going to die of this, I hope it is sooner rather than later.  The difference between him yesterday and the day before was profound.  He was very vague and prone to drifting off to sleep, even while I was feediing him lunch.  Perhaps it's better to sleep rather than be awake and be in pain - but it's a grey existence.  I hope at least he dreams beautiful dreams.

One of the boys finally said he would seek to come visit him next week on compassionate grounds. There has been nothing standing in the way of him investigating whether he could or not.  Only himself.  The guilt is going to hit big time - which I think is why he lashed out at me on the phone.  But he'll have to sort it out by himself.  The writing has been on the wall for years, the last six months on billboards.

I keep looking for him.  Feel his presence having a nap in the other room or leaning back in the recliner watching the news, or listening as he usually looked at the ground.  Even now I feel his presence in the living room calling me back to keep him company.  It is the oddest feeling.  Didn't have it or was too tired to take note last night. but tonight with less sleep and tiredness, his absence plucks at my sleeve like a malnourished child.

A soupcon of guilt remains - having nothing to do with the elephant in the room guilt.  Abandonment.

Card deck painted by local artist with pithy sayings.  I draw a card every day.

Sunday:  Prepare to celebrate
Monday:  Find the peace
Tuesday:  Embrace the change

Celebrate?  What an awful person I am if I celebrate Richard's going into hospital. But I am celebrating.  Sad, yes.  But an enormous weight is gone.  I am free.

Peace?  Find the peace to accept that my emotions don't follow the proscribed and socially accepted format.  To accept my feelings of relief, even of gratitude doesn't make me evil or uncaring. It makes me human.  It accepts I am tired in spirit and need time to recover.  To accept my weakness, to acknowledge I'm not 'good' enough, is human and that I did try and if I forgive myself I will find peace.

Change?  Yes, all of it.

Richard went into hospital today, the second time in 3 days.  It's possible, probable, he won't come home again.  It is too unsafe now.  When he 'goes away' with the LBD, I can't keep him safe.  He doesn't understand or follow directions, even when he is in serious danger of falling over.  He collapsed on Wednesday and fell against me.  He had a skin tear on his elbow but it could have been so much worse.  Another fall I tried to catch him and ended up pinned beneath him.

When he is 'good' he is quite good.  He had a good day Friday, walked, talked, made sense sometimes although often he says things and I have no idea what he means ('It's good to have 30 or 50 of them."  "Of what?"  "Sugar."  "Sugar?  Like sweet sugar?"  "No, SUGAR,' gesturing toward my midriff).  But when he forgets who I am, who he is, what he is...I'm helpless.  I can't leave him but I can't stay at his elbow all day either.  The senior paramedic this morning said I had to make a point of looking after number one.  I didn't tell him I'd already made the decision to place Richard in respite then permanent care.  But then on Friday, when he had only one small accident, I think, piece of cake.  I can do this!

Except I can't.  I know I can't.  On the bad days.  Four half showers, one full shower, endless laundry, stripping of the bed, knowing oh, knowing there comes a time when afternoon walks end, when the horses have to  cope with grass only, when arrangements have to be made about the groceries, when I become  a prisoner in a beautiful prison.

And am I a 'big' enough person not to resent him for being the cause?  I hope I never know.

So why is he in hospital? He complained about a pain in his groin a week? ago.  Nothing much, hurts a bit, not too bad.  Saturday morning, 12:30 he is whimpering and asking to be taken to hospital.  Call an ambulance as I don't feel I can get him to the car safely.  The emergency doc palpates and finds the sore spot on his pubic bone, right hand side.  Come back in the morning for xrays.  We get home about 4am, don't sleep, return to hospital for xrays.  Nothing.  Sent home with half a dozen codeine derivative pain relief tablets.  Yesterday afternoon, not too bad, he sleeps a lot, spends most of the day in the chair but doesn't complain, can walk to the loo, eats dinner.  Give him paracetamol before dinner.  12:30am crying in pain.  More tablets and again at 5:30.  Doctor rings at 9.  We have a pre-arranged appt.  Tell him the story.  He urges a return and admission to hospital for scans.  Surprised he was sent home in the first place (as were the paramedics).

The scans show nothing.  Soft tissue injury the hospital doctor suspects.  But if soft tissue why is it worsening rather than getting better over the past week?  But they will treat it symptomatically, try and get him back on his feet.  They had to give him morphine this morning to get him out of bed.

Tomorrow I will seek out the social worker and say I cannot have him home again.

And here it is, after 6pm and I can sit in the computer room and write this without  checking on him, without worrying I'm offending him by not keeping him company.  And then when I climb into bed tonight...to sleep alone.   I grieve and I exult.  There is loss and there is  freedom.   Massive guilt and bubbling joy.  

This morning lying in bed, following my gut, thinking I can do this, I can't live with the guilt if I don't.  Two hours later admitting I can't do it.  Fooling myself.  He didn't know me, didn't remember how to eat, didn't recognize the food in front of him.  Spilled most of it on the floor trying to get up.  Went to the shed and dropped a big poo on the floor, the toilet seat then walked in it.  Poo on his hands, on everything.

Helen, friend and nurse, not Richard's sister, arrived just after I'd cleaned it  up.  She'd offered to come sit with him while I went and did the horses and the shopping.  Was afraid to leave him alone.  She hadn't seen him for awhile (thanks to covid19 restrictions).  She couldn't believe I was taking care of him on my own and had been so long.  He is high care, she said.   It is dangerous for him here.  He needs to be somewhere where he can stay safe.  It is no longer safe here - and you, she said, can't keep doing what you're doing. 

Helen has returned home and I sit here with the weight I didn't know I carried off my shoulders.  Decision made.  He goes for respite but he won't be coming home again.  They wouldn't let him come home again even if I wanted him to.  Now just to find him a permanent place closer to home.

And so another story ends, another begins.

So ... sent off R's assessment to a place in Byron Bay where he has been accepted for a 2 week respite.  They don't do less than 2 weeks as it takes that long for them to start to settle.  Go down on Monday to pick up the forms, then to the doctor to get meds form filled and then to chemist for meds to go in an approved Webster pack. 

The woman I spoke to delicately asked whether I was considering R for permanent residency.  Day before yesterday I probably would've said no but that was before the fourth and last shower at 11pm last night and the second change of clothes (only one shower needed) by 11am today.  Selfishly I think I could do it if he didn't recognise me anymore but at this point it would be cruel. 

When I broached the subject of respite care he became angry, angry because he's frightened, frightened he will be abandoned, frightened to be alone among strangers when all the armour of mental and physical health has been rendered useless. 

But the stress increases.  Came home from feeding the horses; dishes still undone (that's one thing he consistently does, often they need re-doing but at least he feels he contributes and his entire life has been doing for others).  Found him in the bathroom with poop all over his hand.  He'd tried to wipe his bum without toilet paper.  And he is so contrite, confused but contrite, knowing something isn't right but unable to fix it.  Heartbreaking, this tall proud and gentle man reduced to this man/baby.  Dashed off to the farm a second time to lend my keys as Jilleen had locked hers in the feedroom.  Gone 20 minutes max and he'd managed to pee all over his clean khakis and shoes.  Running out of clothes. 

And I'm tired too and making mistakes.  Not sleeping.  Made the mistake of looking up the cost of aged care.  The horror will keep me awake again tonight.  Don't know how I'll manage it when the time comes.

But this too shall pass.  It will be okay in the end.  Somehow. 

Teary again this morning but able to quash  the prickles behind the eyes. 

Yesterday, in the rush to make early doc appt. didn't have my usual quiet head space moment.  When the coffees are made and the cats fed, I go to the shed to make Mikaela's breakfast as well as the birds'.  Before I start taking breakfast to the aviaries I sit down for a few minutes.  There's one of those decks, like a tarot or angel card deck, from which I pull a card at random.  Today's card, 'Ask and it will be given'.  And my reading, from Iyanla Vanzant's book Until Today, read Help Help Help Help HELP!  
 Kind of appropos methinks.  Recognizing and admitting I need help are two different animals.  Like today, just about ready to head out to the horses when Richard materializes on the deck holding his faece covered hands in front of him.  "It's bad," he says.  I can see that.  "It's everywhere," he says, nodding back toward the shed.  I'd gone down a few minutes before asking if he needs help.  No, he answered although he didn't sound very confident but I left it at that.  Part of keeping him safe is trying to preserve his dignity during the indignity of this period.  

So it was okay.  Just get in there and do what needs to be done, the shower, the disposing and dispersal of soiled clothing, the wiping down of every surface he's touched.  One step then another then another and then he's clean and fresh, dressed.  I've got this!  I've got the new normal.  I can cope.  The threat of tears so far away they may as well be in Marseille.  So what's the big problem?

The problem is it is only papered over with useful business, like those wasted days when instead of doing good stuff like creating, thinking, pulling something from nothing and doing focussed work, the day is awash with busy-ness.  

My hat goes off to every one of those heroes out there who are living this and coping with grace,humour and love.   Have gone through the phases of impatience and anger and 'why me?' and passing through the acceptance phase (I think/hope) to love.  Love truly unconditional.  He can not help.  He can not love like he did.  He is totally dependent.  And the tenderness and love I feel is almost worth the price paid.  Perhaps true acceptance is when it becomes priceless.

Today I think is the real first day of grieving.  Grieving as though Richard has died and in a way, he has.  The companion of 33 years is slipping away.     It is very hard and I can't stop crying.  I'm sick with crying.  Saw the doc today.  He made me promise I would try and get Richard into respite care for a week to give me a break.  So I've rung but the woman I need to talk to is away.  Probably just as well as I can't talk with blubbering.  Crying now.  Sick of crying.  But suppose it's several years of not crying that is finally erupting, too much pressure over too long a time.  Has to be some release.

Hugged him this morning and his arms around me were those of a stranger uncomfortable with hugging a stranger.  Asked him if he still loved me and he said, "I don't  think so."  Of course, Richard, the Richard of old does love me, somewhere in those burnt out synapses, those well worn channels of comfortable reliable love now truncated.  But there is no going back.  The good old days with my best friend are gone.   I truly am his carer now. 

I'd forgotten how grief feels.  How all encompassing, how exhausting, yet at the same time, how trite.  A mantle of sorrow, a pain behind my eyes, a lethargy and this feeling of sinful self-indulgence, how dare I cry, how dare i conjure up tears with sad thoughts and images and poor me scenarios. 

Today I'll cry.  Tomorrow will be better. 

May 1st was our 30th wedding anniversary.  Less than a week laster he couldn't remember my name. 

It was a bad morning.  Confusion reigned.  And anxiety.  He was so anxious; about the horses (who's horses?  Who looks after them? Where are they) and the grocery store (why the grocery store?  Do we always go to the grocery store?).  And phantom appointments.  When is our appointment?  With whom?  Where is it?  When is it again?  But there was no appointment.  By the afternoon he was better.

It is a long goodbye.  Feel the sadness and tears welling up and firmly shove them back down again.  Not now.  Not now.  When all this is ended, I'm going to sit down and wail. 

Is it wise not to feel my feelings over a long period of time?  Not sure.  I feel them, I just don't indulge them.  Later, I say.  Later.

Even so there is much contentment too.  The horses, what a game changer they are.  Just that hour away, talking to no one (save the horses but I don't say much to them and they've yet to utter one word to me), watching the welcome swallows dart in and through the stalls, the hawks gliding over the paddock, the jutting finger of Mt. Warning, sometimes shrouded in cloud, sometimes grey and hard against the blue.

And of course, the weather.  Glorious weather.

And Richard too.  The caring part of me, that maternal bit that only found outlet in animals, blooms.  His eyes, huge and lost, overwhelm impatience with their innocence. 

Wrote to all the attendees of Art in the Shed cancelling it for the forseeable future.  Relief.  Has been on my mind; could I host the AITS and take care of Richard too?  On a good day, yes.  But the good days are fewer and fewer.  Already today we have had 2 accidents and it's only 2pm.  So I cut myself some slack and feel better for it.  Knew it was the right thing to do.

Reminded of the world of men the other day.  Walking with two friends (and Mikaela).  A car pulled up beside us.  The man inside, a local, disturbed because he comes up on us too quickly.  Admits he speeds but it would be better if we all walked on one side of the road (agreed) and walked on the other side of the road.  He saw my face and said, "you don't agree?"  No.  I was taught, horses and bikes with traffic, pedestrians against.  "But," he said, "growing up in WA we always walked on the left."  And with that statement he was satisfied.  He had made the pronouncement and we would do as he asked. 

Except.  I don't like being dictated to.  I dislike the sense of entitlement, I am the man.  You are a mere woman.  You do as you're told.  It is the (man's) law.  However NSW road rules for pedestrians are they walk on the right, into the traffic. 

My friends are filled with trepidation each time a fast car approaches, like guilty students trying to evade the hall monitor.  Like guilty women trying to evade the judgemental male.  But he wouldn't dare stop and ask why we aren't doing as we were told.   Would he? 

He fell again today.  I heard him call me from outside but assumed he wanted help with something minor.  Because he doesn't think clearly and doesn't make connections like he used to, his outlook is much more immediate, rather like a child.   I might be up to my elbows in making dinner and he suddenly needs me to find his shoes or dig out a belt or help him search for that yellow handled pair of pliers he lost months ago.  Today I was carting in a box of vegetables, heard him call and thought, nyet!  He can wait a moment.  So he did.  On the concrete.  Found him when I took the empty box outside. 

He tripped rather than fainted.  It is impossible for him to stay mindful enough to watch where he puts his feet.  I try and use startling images to help him remember to step wide and parallel.  Tell him he's got an echidna between his legs (today I upped it to a porcupine), but he can't stay present for more than 2 steps before he's heel and toeing again.  It's a wonder he doesn't fall over more often.

Almost couldn't get him to his feet.  Told him I'd have to ring our neighbour as I couldn't dead lift him.  Richard can't help much.  His body just doesn't respond like it used to.  The Parkinsons freezes it in whatever position he happens to be in.  Ask him to move his feet beneath him so we can try and get his weight centered.  He doesn't budge.  His joints don't flex either. 

Finally stood him up and except for a laceration on his finger he's okay.  But it's only a matter of time.

Today I filled in the form to buy a gravesite at Laidley Cemetary.  But am consulting the kids.  One site is fairly close to his parents and first born son but it is lawn, no monument allowed.  The second site is much farther away but can have a headstone.  I think they would like a headstone but need to ask them.

And ask Richard too (and foremost!) but am finding it difficult to broach the subject.  Don't want him to think I want him gone or that I am gleefully planning for his demise. Nor do I want him to think he is dying and things are worse than they are.  That's a self fulfilling prophecy. Still, it is one of those disconcerting things which must be done. 

Bugger.

One of those strange dreams that wake me up. 

A path less travelled through and over scrubby grassed sand dunes to andark and gloomy house.  Usually took a paved path to the house but this time the dune shortcut.  Someone was with me, my usual dream companion who remains just out of sight.  I never see his/her face. 

The house so shuttered against the day it was difficult to see.  Large paintings on the walls.  Charcoal?  Dark against the darkness.  By peering closely I could see they were portraits; an eye here, a mouth there. 

Two men, brothers were there.  One of them told me they'd finally convinced their mother to go into a nursing home.  I saw her, shawled and bent but tall, steady on her feet.  She didn't look frail or feeble.  Nevertheless the son was pleased she was finally going to a facility where they would look after her.  She was leaving behind two cats, one of them a 19 year old semi longhair tabby.  I don't know what the other one was.  And two birds, one a budgerigar.    The son said all four of them would be destroyed. 

But couldn't I take the budgie at least, I asked.  Give him a home.  No.  It would be destroyed along with the others.

And then I woke up.  The wind was howling, the half moon shone and I grieved for the death of the dream animals. 

Wondered before moving the horses how I would fit in an extra hour every day to go and feed them.  Oddly finding that extra hour has freed up time.  When all the hours of the day stretch before me to do the things I have to do, it takes all day to do them.  Now, out of bed with a purpose, although I've always been an early riser, I do the morning chores to try and leave by 8:30, 9 o'clock.  Home by 9:30, 10.  Do yoga and still have an hour or more to do some of the many ongoing chores - whippersnipping,  window washing, sweeping, cobwebbing, aviary cleaning and repair (the galahs are always destroying their perches), or, like yesterday, washing and waxing the cars -had to clean off the mold first!

 Richard tries to help but is pretty much ineffective now.  Some part of him is dismayed by that.  Today is our 30th anniversary.  He asked what I'd like for tea.  Before I had time to censor my mouth I said, but you can't cook!  And of course he can't.  Should've found a more diplomatic way to say it.  The thought was lovely and he used to be a good cook, far better than me, everything by taste and intuition.  Now he butters his toast with a fork.

So that an extra hour is necessary and quite a gift.

The real gift though is that hour mucking about with the Boys.  They've started to wait at the bottom of the hill which means I don't have to trek across the paddock to get their attention (strange how all the other horses in the 20 acres lift their heads and prick their ears when they see me while Pagan and Balthazar continue to graze) .  While they're having breakfast I run a quick brush and curry over them, check for any injuries or problems.  Balthazar was reacting to the wet grass with weepy scabs over the white skin of his muzzle.    All healed now with the use of Filta-bac.  He's put on weight and is quite glossy again.  Happy horses and happy me.  My natural element, just hanging out with them and having a few quiet minutes alone.  Does wonder for my peace of mind.