Becoming a Widow

Yesterday was a bad day. Today was a good one. Yesterday I floundered in the doldrums. Today I caught a wave. Yesterday I was weak and frightened. Today I braved a shop for a refund and a call to CityLink. Yesterday I had two day sleeps and a good night sleep. Today I was awake early, did my yoga, worked on my short story,  and went for a walk. I have made a list for tomorrow which includes finding a painter for the house exterior and a window cleaner.

I found the most wonderful apparatus today in the garden tool shed. It was a window cleaner that attached to the hose. The labels were peeling but I had enough instructions to attach the the sprayer and hose down the outside windows and some really dirty weatherboards. It lathered up a treat. Not the same quality result that Gerts would have had, setting up scaffolding and washing by hand. But good enough. Cleaning can be such a mind numbing activity , but when your brain has gone AWOL anyway, it is very rewarding.

I was determined to relate again to the whippersnipper. I used to despise  instructions but now I am finding them very helpful. When your handyman has gone, read the instructions. I donned my old boots, got my eyewear on and the old clothes and I started the bugger. I trimmed the lawn edges and started slashing the shrubs. At some point I realised I was slashing to no effect and found I had broken the whipping thread. Into the shed and among the cobwebs I went to find pliers. I removed what remained of the old thread and am off to the big green shed for 3mm thread tomorrow. Not much done, but much achieved tackling the man tools.

 

TWO WEEKS

Two Weeks 7^th Dec – 21^st December

Gerts is here and he’s not here. The house is emptier and his room is silent. No electronic hum, no blue light and shelves gathering dust. The pictures of his ‘boys’ on the walls of his study no longer look down at Grandpa. The car port looks huge now that his car has gone. Vitamin C bulk packs say he is gone. I say ‘He is gone’, all the barrels of vitamins, the scattered apricot kernals and the quack supplements say ‘gone’. The old wheelbarrow with the punctured tyre says gone. So too the dead tomato seedlings and the empty shelves in his poly tunnel. His shed, crowded with unsorted stuff, hanging with cobwebs says ‘missing in action’. The horse radish is out of control and needs lifting. The juicer in the kitchen is clean and silent. I haven’t bought soy milk for over a month.

The blocks have been removed from under the dining room table. He needed them for extra height to get his wheelchair in close.The position of the table no longer reflects his need for navigation space. Two armchairs are back in position for the same reason. I have removed the digital clock from his bedside table. The house has a sterile neatness with an overlay of my current slovenliness. The funeral flowers have been binned after the recent heatwave, but not their droppings. The Sympathy Cards are unanswered and lying where the gusty cool change blew in and scattered them.

Last week, I followed the bereavement booklet ‘s list, ‘People to Notify’. It helped to have a list to tick. Yesterday I took scissors to his medicare, pension and credit cards. It felt like a crime. And why should I return his passport to the passport office? I am also keeping his wallet and his drivers licence.

I still feel strange informing people of his death. It sounds like I’m lying! A huge presence in my life has disappeared but to the world and the universe it is less than a speck of dust. Life like Nature is largely indifferent and inexorably dynamic. I will be swept up in it when I want to be sad for longer. He deserves that. But already I am making plans, effecting slight changes. I am a single now for Health Cover, there is only one car to insure, one name on the bank account. I changed all the policies! Not just in name but to different companies with cheaper rates. Tomorrow I take possession of my new car and I have bought a new standard lamp for the lounge room without his input .

My habits are changing too. I get up early in the morning and stretch with some yoga poses and go for a walk in Victoria Park. It is such a wide open space and the trees are grand. I poked around his shed today and found his ‘medicine chest’ of emergency tools. The drill and the driver, the drill bits and the screw bits. I found the chargers and the lithium batteries that click in and out. I had man help putting my new wheelbarrow together and replacing the leaking tap. I started the whipper snipper by following the instructions on the stem. It took a man to show me where they were! I took to the compost with a fork and carted it in the new wheelbarrow to the cleaned out bed and despite hot weather on the way, planted out the seedlings that have been on the verandah for a week.

Images of Gerts failing body still come to mind and I have taken to kissing his photo, something I have not done before to any deceased person in my life. And I love to dwell on his face in those last days when he could do little more than raise his hand to caress my face. The staff told me that they noticed how, in all his time with them, his face lit up when I entered the room. I also know it lit just as brightly for the very kind breakfast lady! He did take pleasure from the people around him.

Tomorrow I take possession of my new car. What fun!

THE LAST TIMES

When someone is dying ‘last times’ are like a series of showers. You never know which of the showers will be the last for today. And there is little point wondering. It is a shower. Do whatever it takes… stay home, go out but with a raincoat, hat, umbrella and do what you have to do.We don’t spend time wondering if it’s the last one.

We didn’t know when Gerts came home in the wheelchair that it was the last time. The next time he had to cancel. We didn’t know that with one cancellation it was cancelled for life.

I can’t remember the last time we went to the cafe , only that there was one. Did we have the good coffee made by the man or the bitter coffee made by the woman.

Was that the last sparrow we watched together, eating that jelly slice?

The jelly slice from Rosencrofts was so good and we planned to have many more. But we didn’t.

When was the last time you wore your rabbit felt akubra? Was it sitting in your wheelchair in the sun on the street pavement, in front of your new home at Gandarra?

When was the last time I wheeled you anywhere in the wheelchair? That one and the one before I do remember. Your  daughter visited with the boys. We went to the Japanese garden. Chris had made a fudge slice and the boys who were climbing the trees and kept appearing as the slices disappeared.You kept saying ‘Aren’t the boys lovely?” Liam sat on the stone ledge and talked about something interesting but I don’t remember what. Later that day I wheeled him out to the same place and we had a red wine with Jacinta and Peter. Jacinta brought cheese and bikkies. That was the last time. By then time Gerts had a wonderful non-discriminating eating pattern. He had let go of the restraint he doggedly maintained throughout his life. We didn’t know it would be the last time he indulged in cheese.

How do you plan your life to be present at ‘last times’? You want to plan for them, be on time, grasp them, photograph them, hold them. Sometimes, wondering about ‘the last’ time can spoil the present time. Is the last time important if one is ever present? Can it be held, bottled? Is it so very different to previous times.?

I remember the sudden surprise and joy when you opened your eyes for me two days after your decision to go in your sleep and it happened again the next day. With difficulty of focus  you  moved your  hand to my face. Your eyes were full of love, a kind of bliss. With all my heart I loved you.

The last day, before I knew it was the last day, I said to you,’Gerts you are already gone from us but that engine of yours keeps going like a steam powered piston.  Chug, chug, chugging, working so hard. You can stop now Please rest.’

When I squeezed your  hand and said, I’ll be back in a minute,’ and kissed you  on the forehead, you gave a little shudder and a gasp of breath. That was the first time I had heard that response,and I went to the bathroom. I came back to some change, some shift, in the room. It was very quiet. There was no sound of breathing. There was such stillness.

‘I think you’ve  gone,’ I said in amazement. There was no-one else in the room. I put my head on your chest. I thought I heard something. I checked your pulse. Nothing.

Then a nurse came in and confirmed it.

I didn’t know that the gasp I heard was your last. But I remember it.

By the end of that last hour in the room, you didn’t even look like my Gerts. You had been dripping away for a week in the peace that  palliative care can provide. No spasms, groans. No delirium, no Last Words. But such a tender time for me of listening, not counting those last breaths because where would I start?

THE MISSION (cont)

MONDAY Day 2

The orange for breakfast was not so sweet as yesterday. We rang the Embassy and by re-iterating the difficulties Matt’s illness imposed – his contrariness and his alternate reality, read madness- we managed to reach an upper level of command, which was the Primary Secretary for Consul for BA, Naomi. (not her real name) We made an appointment for the afternoon. We were to meet with the doctors first. The Reception desk at Argenta Towers, our hotel, callled us a taxi and we arrived at The Guardia of the hospital about half hour later. The traffic was pretty heavy as it was a week day and the fare was 113 pesos, about a quarter of the eye liner. The hospital is in a district called Flores and the streets were dirty and packed with cars and buses and lined with graffiti and motor bike shops and mechanics. We intersected an arterial street named Ave. de Eva Peron which looked like the Footscray end of Williamstown Rd. The hospital was in a hub for shopping and public transport. It was a grand Victorian style building painted green and the Psych Ward was behind.

The Guardia was a separate building inside the the main gates, a grungy reception area with the lingering smell of a urinal and the look of imposed socialism. The staff behind the grill were cheerfully impervious to their surrounds and very helpful. We were expected. We were escorted to Matt’s ward. Dr Farugia and the Resident had a long talk to us about how well Matt was doing. We nonetheless insisted that under no circumstances could we take him into our care before Weds afternoon on the way to our flight leaving at 9.30pm Weds evening. We were given scripts for his anti-psychotic and for a tranquillizer injection. He has been on a generic form of his anti psychotic and the standard of generics in Argentina cannot be relied upon. They use them in hospitals because they are cheap.

Matthew greeted us disdainfully. He was arrogant and disrespectful not just to us but also to the staff. His plan was to live in Argentina off his $20,000 which I had foolishly but with good intentions forwarded to him. He had managed a trip to Colombia in June so well, I judged him responsible enough to have access to the funds. I told him the bank had reversed the money back to me. He refused to believe me. I gave him my phone and with the hospitals open wifi, he looked up his account. I stepped back from him as he saw the balance. I was sure he would lash out in anger. He could not believe his eyes. He did not think it possible. He threw the phone in my direction in disgust. I managed to catch it and I was not happy.

‘What do I do now?’ he said with a theatrical roll of his eyes.

That was the good news for the day, a display of surrender to the reality of his changed circumstances. How long would it last?

We said we would return later in the day when we had picked up his bags with clothes and toiletries from the Embassy.

“Buy me some tobacco, as well” he said to me.

‘I don’t think I will, Matt, as you have been so rude to me’

He turned to his sister. ‘Will you get me some?’

‘That’s the first time you have looked at me today, Matt and I don’t feel like getting it either.’

We turned to go.

“Get a lighter as well”

We’ll think about it,’ said Tina

We hailed a taxi on the noisy street and searched for a ‘large’ chemist which was more likely to stock the clozapine patent than a smaller one. We tried two and received a shake of the head. One pharmacist looked rather alarmed. Perhaps she thought Christina or I were in need of it. We decided to go to meet Naomi at the Embassy. Perhaps they could advise as to a likely source. The taxi took us to Palermo, a leafier suburb than Flores. There was security at the door. All bags and electronic equipment were placed in a locker, by the uniformed concierge or Security man and we were directed along a white walled pathway to the main entrance. It was quiet as a monastery. The reception area where we waited had magnificent parquetry floors and was tastefully furnished with a colour scheme borrowed from the Indigenous art on the walls. Although Malcolm Turnbull had been Prime Minister only a few days, his photo was prominently displayed along with that of Julie Bishop. We waited just long enough to appreciate we were in hallowed ground when Naomi appeared. She was an unremarkable looking middle aged women whose clothes were similarly nondescript. She apologised for yawning and explained she was an insomniac. She was very easy to talk to and generous with her time as we went through possible scenarios for Matt’s return and made a list of priorities. This was all on the assumption that he would accompany us to the airport.

We would need a medical certificate stating he was fit to travel.

We were unlikely to get a medical assistant to accompany us. In the eyes of the airline it could contradict his fitness. We wanted him tranquillised at the hospital and we wanted oral sedative to keep him calm, if necessary, when in the air.

The Embassy Interpreter Gina showed us where to access the phone and the internet. It was she and another staffer who had gone to Matt’s hostel the previous week to persuade him to catch the flight I booked for him home. It was she whom Matthew had threatened with boiling water. This had precipitated his committal to the nearest hospital. She had been extremely frightened at the time but held no grudge. There was a volatility to Matt that the Embassy staff had underestimated. She was very sweet and understanding and accepted no apology from us for his behaviour. Christina had big tears rolling down her cheeks.

‘I cry’, she said,’when people are so kind.’

She was up close and involved in her brother’s psychosis for the first time. I had been through similar logistics trying to get him home from London where he lived rough for six months. I had first hand accounts from friends and acquaintances there of his sorry state and drug use.

Gina located a pharmacy which could obtain the branded clozapine and the tranquillizer injection. We would pick that up tomorrow, Tuesday. That was a great help and a huge relief.

We collected his belongings. There was a large bag he uses for golf and the side pocket was inexplicably still full of golf balls. It had more clothes than I expected and they were heavy with Matt’s smell. There was a back pack that was also heavy with hard cover books, one about the Sydney Swans and their glorious AFL Premiership of two years ago.

The Embassy guaranteed a car and driver to take us from the hotel to the hospital and onto the airport on Weds afternoon. It was late in the afternoon when we decided to return to the hotel, get his clothes washed, find somewhere to eat and rest for the remainder of the day. We did pick up tobacco for him and after some rest I wanted to taxi back to the hospital with his clean clothes and smokes. A few deep breaths later and a think about the distance and the traffic conditions and on Christina’s advice, I changed my mind. He had been without his belongings for over a week and would show no appreciation for their delivery a few hours earlier than the next day. We ate our chocolate that we had bought with the tobacco and chilled out. By 8pm I was in bed and reading. But not for long. I fell asleep and so did Tina. By the end of the day she was exhausted and said she felt she’d been hit by a bus. I woke early the next morning and could not help rehearsing the trip home in my head with all the attendant anxiety. In an attempt to calm myself, I put on a lamp and started writing. We have no plans as yet for the morning. All our business is in the afternoon. We pick up the clean washing from the nearby laundry, pickup the meds from the pharmacy Gina located, go to the hospital with his stuff and brace ourselves for another encounter.

The Mission

SUNDAY Day 1

Jetlagged

My daughter and I had a horrendous flight just because it was so long. We flew more three quarters round the globe because that was the quickest. Longest in miles, shortest in hours. 35Hours in all with only 3 of those hours, stopovers. In Rio, we didn’t even get off the plane. They refuelled and the cleaners came in, took out the rubbish by the truckload and restocked with plastic food and cups. Airplanes are so customised for storage, it was theatre to watch. Everyone had a specific job and everything that was brought on board slotted seamlessly into walls and drawers.

Three hours on from Rio we landed in BA and after customs we faced a noisy array of people competing in Spanish for our taxi custom. We were too tired to discriminate and took a pre-paid, flat rate of 430 pesos, cash.

“Go with heem’. The agent indicated a woman and we followed her to a rather clapped out van which rattled and grumbled on diesal. She drove fast up to 120kph. From the freeway we entered Blvd de Juilo, a vast space of lanes and traffic. I got to love Juilio as an orientation point as it runs parallel to the seaboard the length of downtown BA. It is lined with trees which were largely in hibernation but I could see their rich summer promise. It was well lit but remarkably free of moving neon. We arrived at Agenta Tower in Ave. de Juncal about 10.30pm.

It was fun pronouncing the j and the g as an h. We were blending in, speaking like the natives….!

And then the luxury of beds after economy seating. Is there any other kind of sleep as good on the planet?

Exploring

We were not expected at the hospital Pineiro till the next day when the doctors would be on duty and we could see Matthew and evaluate the risks of getting him on a flight home and the help that we would need. I knew that he would not co-operate in a demented state and Christina and I were sick at the thought of our daunting task. We decided to enjoy the Sunday we had as best we could.

Our hotel was in an older part of BA which is a mixture of Parisien, Castillian and plain ugly grunge. But first I must mention the orange I had for breakfast. I can still taste the sweet, sweet juiceness. I can smell the citrus grove and see the sunshine in the deep ruby colour. Glorious. It was not here but in nearby Paraguay that Henry Lawsons mother built her Utopia where pampa grasslands were greener than Australia, the trees offered deeper shade and the climate softer breezes. It was Paraguay that fought a bitter takeover war against Argentina, Brazil and lost. Nearly lost their ability to repopulate too! Utopia. Bad choice.

There are gardens nearby and a pedestrian walk to Galleria Pacifica which is one of your generic malls. Being a Sunday did not present the best pavement view as the metal roller shutters were down on many of the shopfronts and liberally sprayed with graffiti of the bored kind. It is not cheap here in Argentina. Although there are 6 pesos to 1AUD, the simplest things can cost hundreds of pesos. Just for fun I decided to replace my worn out Clinique eyeliner. We were offered purple but decided on charcoal and it cost me more than the taxi fare from the airport.

‘Mucho pesos’, I remarked to the salesgirl. That put a salutary brake on any more ‘fun’ shopping.

We went in search of a local SIM card in the mall. We were directed back to the street where SIM card or ‘chip’ shops were all closed.

We continued our walk past baroque doorways and elaborate stone buildings and found ourselves in the middle of an Italian food festival on Ave de Mayo. This was the street in the address of the Hostel Estoril which evicted Matt in a fanfare of sirens, ambulance, police and Embassy staff.

A white adobe, colonial building overlooking open space with gardens and monuments had been converted to a museum. We picked up a smattering of Argentine history from a small amount of English translation. The floor was made of large terracotta flagstones, the mud walls made deep mantles in the windows and it was designed to catch the breeze. The rooms opened to colonnaded balconies and the upstairs gave a broad view. It had a status that I recognised from Zorro movies. A wealthy tyrannical merchant cheats his workers and the feisty senorita has her tight bodice undone with a neatly ripped Z.

We had some fun with some young women selling tickets for a Tango Show including dinner and pickup from hotel. We bought and followed her to an office. We displayed our Spanish much to the amusement of the friendly hangers on and having mispronounced the lingo for ‘good day’ they gave me a phrase like my mispronunciation, ‘oh mi dios’ Oh my God.

I slapped my hands on my face and exclaimed, ‘omidios‘ and the hilarity was so worth it!

My Bottom Line

My Bottom Line

The sun came to Ballarat and G was singing. A few things happened in between like a bowel movement. In bed. I think this is the new normal. And I can do it. And G is no longer ashamed and humiliated. It is what it is. It is manageable with the special disposable pull up pants and it is another reality of caring for the dying and especially when it is a long slow process to the end.

‘We support your decision to put him in a Nursing Home, whenever that may be’, said his family.

‘When I have to toilet him in bed’, I answered.

Everyone understands about that.

It was my bottom line and I drew it thick with conviction.

But I amaze myself. I didn’t think I could care this much. I did not think my natural fastidiousness could be conquered to this extent.

I pull on his tracksuit pants as if he were a doll, his legs are so inert. We did the transfer from bed to wheelchair. I started the washing up and he wheeled himself to his spot at the table and then I heard him singing He organized his pencils and pens for drawing. And then he coloured them in and his attention to detail, his industry was soothing for us both. The sun continued to shine, a friend called in with treats, I chatted to my sister on the phone and had a long conversation with my daughter. And I’m OK. I had a lovely dream. Someone (who looked like Noel Ferrier) kissed me with a soft lingering kiss. I was loved.  I knew I was not weak but strong. My daughter will go to Buenos Aires with me to bring home my son when he is well enough.His treatment in the Spanish speaking hospital will begin soon. The necessary paperwork from Melbourne is sitting at the beginning of the pipeline and will begin to flow after the weekend. I have done all I can. I feel light and emptied of that worry. It is always possible he will get worse while in this limbo between being held in an emergency department and a bed in a private clinic . But for the moment we have calm. What a mess! What a cleanup. Get The Cleaner from Pulp Fiction quick!

Today is another sunny day. G is still asleep. Lets hope it is a good day. Thankyou my dear readers for following me. You shower me in grace.

The Waiting Game

This will be a waiting day. My son is about to be committed to a psychiatric facility in Buenos Aires.

Why? Because he has the worst kind of mental illness… he thinks he is well.

I booked a flight for him on Weds to come home where he will be committed to a psychiatric hospital in Melbourne. He is between a rock and a hard place and he may slide between and live on the streets in Buenos Aires. It is not all that much fun recovering from schizophrenia either. He loses a very alive if self destructive part of himself in exchange for a life that imprisons him to a regime of daily medication.

What is to be done? How will it work out!

I ask myself what it is I said that empowered him to take this step, to walk out of his flat, to leave a door open, and to catch a plane to Buenos Aires of all places. Has he regressed to 10 years ago and is seeking to renew a relationship with a girlfriend of that time who is now married and living in Buenos Aires. Will she be pleased to see him? Will she even remember him?

Did he con me into giving him money by telling me of his plans, hopes and dreams. All of which I have since learned had no basis in fact. Did he lie deliberately? Was he delusional even when medicated? Is he really the Indian from ‘One Flew Over the Cuckoos Nest’? Or is the world really madder and badder than him?

He had a holiday in Columbia and celebrated his 40^th birthday there. He looked happy. He was free. Hews responsible for his medication and he had a good time if at times, lonely.

He came home to his little flat and the surveillance of the Treatment Team. Unfortunate but necessary. He was building a life for himself, slowly but steadily. He complained of the sedating effects which limited his alert hours. It is a very real side-effect and will be tolerated only when he can realise that no meds has worse side-effects.

What is to become of him?

He is in Argentina in Buenos Aires. He has no friends. He knows no-one who wants to know him. He haunts the hostel in his disturbed state. I can imagine how he looks because I have seen him like this before. His six foot two frame becomes brooding and threatening. His dark eyes become sunk, the pupils turning to hard little beads. His dark, thick eyebrows sentiant on a dark mind, a closed gateway to a private hell. He frightens without lifting a finger. He sleeps in his clothes. He does not change them and he does not wash or clean his teeth which build up so much plaque they become green. He smells like a mouldy toilet. He eats voraciously, bolting down his food like a dog. And we love him.

He did not catch the flight. He did not go quietly from the hostel where he had outworn his welcome .

He would not accompany the Consulate assistant to the hospital. The Police were called. An ambulance was called. He was sedated by injection and strapped to a trolly, taken to the nearest hospital and left there in a cupboard, in a tiled passage, in a former torture room for all I know, because there was no bed available. There was no public bed available in the city.

What happens next?

The consulate are looking for a bed in a private clinic. It will cost a lot of money because Matt will be there weeks if not months while his meds are titrated to a level that enables him to safely board a flight.

And I wait.

I wait for the news of where he will be treated. DFAT will call.

I wait for news that his treatment has begun. Monash Psychiatric will call.

I wait for news of an aged care facility where I can place my dying husband for respite because I will have to travel to Buenos Aires. Hospice will call.

No mother could leave her son alone in such circumstances.

I wait for my husband to understand. He will smile.

I wait.

The waiting hangs on me like sodden washing, heavy and stale.

I do not want to call anyone. I don’t want to be seen.

And then there is the real washing. The real washing gives the pleasure of fresh sir. I would walk if I had the energy. I will go out but with no purpose.

And yet yesterday was a good day. We had a family meeting here with G. The Palliative Care doctor came. The hospice counsellor came. We all agreed That G was in the last stage of his life and how can we improve the quality of that time. Everyone was generous. But G lost that last vestige of his fanciful hope. And he is punishing me for it. He is angry, silent and withdrawn. No good will, love, affection,care or help will reach him.

So I wait.

I wait for him to eat. I wait for his call for pain relief. I wait for the dark mood to lift which it will.

But in the meantime……… I wait!

Nighty Night

The Night Time Routine

I’m sure many carers will identify with the feeling of relief when the night time routine has been finished and in some emotional and practical way we can clock off for the day. Maybe some can never do that but I’m lucky that my home person cannot move out of bed. It poses other caring issues of course but at least I have a few hours every night to myself. And what do I do with it? Answer – I watch a lot of TV. Netflix. Currently ‘Nashville’ a kind of musical Dallas. I have been through House of Cards, Wallender, Jack Taylor, Sense and Sensibility TV series, some other drama thing and the one about the lawyers in Shoelane. There’s probably a few more as well, Sarah’s Key and the rest. There are always some remnants of pre-caring days to attend to like emails, phone calls, other office type stuff. Long chats with family members. Their world is still important and sometimes that does not always go smoothly. At the moment my son has stopped his meds for schizophrenia and gone AWOL. I am also reading quite a lot. So when do I care for poor G, bed bound, on the commode chair or in the uncomfortable wheelchair. (Gotta get that big one back today if Pete is on the job. Its harder to line up through the doors but it is much more comfortable for hours of sitting.)

The evening winds down with the meal. G does not eat red meat and I am dying to have those last two sausages from John Harbour. Maybe in another couple of weeks when G sees them as a once a year treat and drops his nutritional ideology for one meal. But its no big deal. Steamed veggies, risotto, frittata, pasta, lentils, stir fry. There are lots of possibilities. Every meal must include the Cauciferous Family. They’re the ones that smell soon after arrival min the pot. Dad Broccoli, Mum Cabbage and the littlies the Brussel Sprouts. Condiments lift the flavour factor. After the main meal he has his dessert, quark, cottage cheese to you and me, blended smooth with linseed oil and sweetened with stevia. I have been adding strawberries for more flavour and I serve it up to him in a cup like yoghurt. Removing cottage cheese lumps tricks you into believing its delicious. It’s an acquired taste for the stoics. Then we have the meds. We have an anti prostate cancer pill, a reduce bladder irritation pill, 2 anti inflams, one vitamin D, one to reduce stomach acid from the something else, one steroid to reduce pain on the spinal cord ,one or more bowel contents softener and morphine as required and the special “organic” meds distilled from a plant. He takes some other natural therapies from the health food shop and of course some Vitamin C which he dispenses himself. He knows how I feel about that stuff excoriating the back of his throat for dubious medical reasons. The urinal bottle and the bucket are emptied for the night and he has a sleeping tablet in case he wakes in the early morning. His days are long enough. Lets bestow blessed sleep whenever we can. The doona comes off so I check the lay of his feet for the night. I reposition his legs with cushions underneath to raise his heels from the pressure point with the bed.

Those kind of dores are not pretty and very painful. I give his legs some up and down movement for circulation and they are heavy! The bed gets adjusted to a flatter position. His phone goes to the charger, the headphones and the control for the TV are within reach. His tablet and water within reach also. Leave plenty of room between table and bed so he can reach the urinal bottle easily in the night. Sometimes he needs a heat pack on his feet. He can’t move them but he can feel warmth and cold. When he is snug as a bug its nighty night and I’ll check on you in an hour.

Then occasionally there is the night when it flashes through your mind that he may not be awake in the morning. Will that be good or bad?

The Sun Comes Out, Briefly

A hour after the panic episode the sun came out but the day did not improve.

I got G back into bed all snug and then it was brekky time. After he has eaten we do meds and then his special medicine oil. The one that makes him feel good as well as the one that will cure him, kill the cancer cells and restore his legs. Very precious stuff. Thats his point of view. I have noticed that it reduces morphine and releases the bowels. Yeah, back to that! A lot of nursing is to do with that end. So after I administered G his 3 drops, I attempted to expel the air in the syringe and draw the oil closer to the dispensing end. It is rather stiff and I was carefully exerting pressure when it released suddenly and the whole lot splat over the shutters and dripped off my ornamental hanging plates.

Oh! oh! Oops!

G had seen it from the bed.

‘Scrape it up’.

Scraper, yes but what to put it in? Not a mug, not a cup, I’ve got it…a saucer.

I got my silicone spatula and I retrieved drops and scrapes from the shutters and the bench. Not a bad haul. I showed G.

‘About 3 days worth”.

I turned to put it in a safe place and then I saw the larger splat on the cornice and the ceiling.

That’s where the cobwebs are and its pretty dusty but what the heck. I clambered up and scrape, wipe into the saucer and scrape. More drops were slowly coalescing into teardrops. I got them. It left smears on the shutters so I wiped them up with my finger and guess where that went. The stain is still on the ceiling. In the meantime, today has picked up somewhat!

The hospice nurse came soon after and we got chatting. I told her about the borderline panic I had experienced that morning. I showed her the scraped remnants on the saucer. I told her about my son with schizophrenia who has added to my woes lately by allowing himself to become manic and suddenly disappearing from his flat and posting on Facebook from Buenos Aires. She gave me a hug.

Three and a half hours later I was resting on my bed next to G and the most pleasant sensation came over me. All pain vanished. Do I carry pain all the time? I have prescription drugs for various ailments, mental and physical. But do they barely touch the surface? I had waves of weightlessness and then the phone rang. The hospice nurse was concerned about the balance of G’s meds. Could she call in later for a chat.

‘Sure’, I said.

And then it kicked in. I made it to the sofa. My mind swirled with psychadelic patterns. One minute I was in the room, next I was in another realm. I did NOT feel good. I had difficulty breathing. Hoping I wasn’t over reacting I called my sister to come over. She said she would be right over. I waited and waited for hours and I called her again. My moments of knowing who and where I was were disappearing. Why is she taking so long? She lives 10 minutes away.

And then all of a sudden the room was full of people. The hospice nurse, my sister telling me to breathe, paramedics talking and laughing, somebody else.

And then the vomiting, pouring out , dry retching, stress incontinence wetting myself.

This is SO embarrassing.

‘I licked my fingers.’

“So it was an accident?’ someone said.

‘Do you want to go to hospital or to your sisters place?’ Hospice nurse.

‘What about Gerts?’ I managed to retain some sense of my responsibilities.

‘He’s fine. Do you want to go to hospital or to your sister’s?’

“I don’t know.”

‘She’ll come home with me. Her vitals are good.’ That was my sensible, reliable sister.

And that’s what happened. G’s daughter came over to cover for me and I spent the night in my niece’s bed, feeling nauseated all night, not able to sleep, my eyes looking at the underside of my eyelids all night while I lay inert, my body somewhere else.

Next morning there was a call at 7am. G’s bowels again and his daughter did not know how to get him out of bed so I was back on deck, in a hurry, fitting the sling and manipulating the hoist. And the day started all over again.

We desperately need to work out some respite time for me and as a family face up to some realities here. This is going on much longer than I thought. G’s rate of decline was so rapid for 8 weeks I did not think he would make his birthday. And here we are only a few days away. I may have to dig in for a long haul of caring as he has reached a plateau and will probably make it to Christmas and beyond. I have to take back some of my life.

PANIC!

The Horror of Excrement

If its animal we step around. We even collect it and feed it back to the earth. Sometimes we even pay for it and the earth rewards us. But our own is a horror unless we maintain distance and control. We do not collect it. We pay for its disposal and we clear it from ourselves as fast as possible. If we are in horror of own own escaping the boudaries we set , we are even more in horror of the faeces of others.

This morning we had a sleepin. G took a sleeping pill at 4am and slept through till 7. I was awake looking into the garden from the low window not really wanting the day except for the promise of sunshine. He was comfortable. All of a sudden he has to go. To the toilet. Something is happening in his reluctant system. Hurry!

Out of bed, pull on the polar fleece. What to do next? So many things. Pull off the bed clothes. Excrement smell in his padded pull ups. What kind of a clean up does this mean? If only I had less horror but there is an elephant pat on its way. Get the sling under him, roll this way, run around to the other side of the bed, roll that way. Pull the sling through. Run to the hoist and wheel it in. I forgot to put the battery on the charger last night. Oops! It might stop working when he is swinging mid air. Hang on! The commode chair has to come from the bathroom before the hoist is wheeled in. Get the pedals out of the way or the hoist cannot get close enough. Hitch all the sashes onto the the hooks. Of course they get caught somewhere. On the bed rail, on the hook for the urine bottle on the wheel of the hoist. There are a million places to get caught . Under the bed there is a spill of leads for the electric bed and the electric mattress. G is straining for control. We get him onto the commode, remove the slings. They get catch.

‘ Hurry Mary, its coming!’

Wheel him to the toilet. I am dry sobbing with frustration and effort. I am a wimp, I know. Defeatist. Now to lift the commode chair over the raised strip between the carpet and the tiles. It is only millimeters high but we always get stuck. It is the millimeters that strain my back the most.

‘Go to the shed and get a strip of timber about a metre and we’ll replace that,’ says G.

‘Yes G. Lets do this first.’

Commode chair goes over the loo and the blessed pullups, tear easily at the sides. Careful what you might find!

And yes I found it. Contained thank god. Rip ’em off and wrap and roll. Its no worse than a babies bottom but we have no baby here. OK. We are in time and I leave G to have his movement. What a lovely word, movement. And how blessed it is after you wait days.

There is great warmth and comfort in a hug and although G was lying down he got arms around me.

I said, I didn’t want to do this.

He said, ‘I know.’

Did he hear me correctly?

I said, ‘ I’ve a rotten life and I’ve had some rotten times with you.’

He said I’ve had some rotten times with you.

I said he has not supported me while my mother died, my father died, my brother died and my son is lost, all on his watch.

He said, ‘I’m not good at handling other peoples emotions.’

He thinks that is the responsibility of that person alone.

“You have to give me as much as you can,’ I said. ‘Otherwise I can’t keep doing this caring thing.’

‘I will’ Another hug, some more sobbing from me and I left the room to deal with my emotions by myself.

I forced a smile when I re-entered the room having dealt with my emotions and it blossomed into a real one.

‘Feeling better my pet?’

‘I’ll get you some brekky.

‘Good on ya,’ he grinned.