A final goodbye to our mother

This Mother's Day weekend, our family and friends in Massachusetts celebrated our mother's long life in a memorial service organised and hosted by our brother P. Mom died and was cremated in January of this year, and you can read her obituary in an earlier post. But as often happens these days with New England funerals, the memorial service was postponed until Spring.

The morning began with a service of thanksgiving and remembrance at the Daniel Morril Funeral Home in our home town. It was presided over by Father John Pastor, who had often visited Mom in her final years at Radius Nursing Home. Fr Pastor noted with amusement that Mom told him straight out at their first meeting that she wasn't very religious. But he was pleased to officiate, and I'm told he did a wonderful job!

More than 35 members of our extended family and friends-of-family attended, including, of course, sister D and her three beautiful daughters (see Those gorgeous 'Benoit' girls), who flew up from from Louisiana for the weekend. Numerous cousins and their families – some of the countless sons and daughters of Mom and Dad's 16 brothers and sisters – also attended.

Our brother had prepared a slide show featuring photos from Mom's long life. This was projected on a large-screen television for guests to view as they arrived. And to introduce the service, D had selected In my life, a song from Mom's all-time favourite group, the Beatles.

After the service, everyone drove from the funeral home to a chapel at a nearby country cemetery. There Mom's ashes were laid to rest alongside our father's on an idyllic hillside location our parents had selected many years ago. Then everyone retired to Cohasse Country Club for a sumptuous buffet lunch hosted by our brother, and peppered by lots of remembrances and laughs, as well as tears. Dad's 92-year-old sister happily took the role of distinguished elder during the lunch. She and the other guests reminisced and shared a fund of amusing stories from our parents' long and happy lives. (Mom was 88 years old when she died; Dad was 86.)

Unfortunately, my sister and I and our two daughters here in Australia were not able to travel to the USA for the weekend. So each of us had written a brief letter to our mother/grandmother, and these were read out during the service.

My niece in Tasmania sent a poem

For reasons of copyright, I'm not able to reproduce Granddaughter A's thoughtful offering for the service: The Wild Geese by Mary Oliver. (In a quirk of fate, Fr Pastor had selected that same poem as one of his readings.) Along with the poem, A sent this note to our brother and sister there in Massachusetts: "I send it to you with lots of love, and warm thoughts of Granny. Think of it as an electronic hug, and may all the birds in all the poems sing and fly for Granny." The beautiful poem was a perfect choice, though A may not have known that the annual migration of Canadian geese in the skies over their New England home was something our parents looked forward to every year.

My daughter sent the following letter to her grandmother:

DEAREST GRANMA,

I’m not really good at thinking of things to say in these types of situations – I’ve only ever been to one funeral in my entire life. So I’m not really sure what I’m supposed to say now except to let you know B and I are both relieved you are finally comfortable with Grandpa. I’m sure you’re indulging in all the things you like – donuts, hotdogs and baked beans; Johnny Cash music; house-coats; yodelling; scratch lotto tickets; sewing, knitting and crocheting; all while watching Mash re-runs or listening to talk-back radio.

I’m not lucky enough to have many memories of you as I have spent the vast majority of my life living away from most of my family – I never really knew you the way Mum did. But my earliest memory of anything at all is one that involves you. I was sitting in your kitchen in a highchair eating baked beans! The other memory I have was the time you were thrilled that, when pushing your dining chair back under the table, I matched up the chair legs to the existing indentations in the carpet without being asked. Our appreciation of each other grew a little more that day, I suspect.

Rest soundly now in the arms of Grandpa and be safe in the knowledge that quite a number of your habits and fancies are genetically safe with me :-)

All my love......Z

My sister in Tasmania sent this lovely tribute:

IN LOVING MEMORY OF MY MOTHER:

Crocheting still reminds me of you, Mom, more than almost anything else. And I'm never happier than when adding row upon row of geometric stitches, reminding me of simpler times gone by. Of course, I also fondly remember your knitting, your patchwork, your sewing, your love of music, your love of the sun, our laughing sessions...but I feel your warmth and closeness most when I am crocheting, using stitches you first taught me all those years ago. I'd have loved to share this new afghan stitch with you. So I'll do it now...

Loving you always.....N

And here is my final letter to my mother:

 

DEAREST MOM

The only thing that helps me to bear your loss, Mom, is the thought of how certain you were of seeing Dad again in heaven – how much you looked forward to that, and how you believed you would actually SEE him, too, with your own eyes.

Losing your sight was such a cruel blow, after a lifetime spent making beautiful things and creating a wonderful home for all of us. I don’t know how you coped with that loss, and still managed to care for Dad at home when you were already legally blind yourself and physically disabled from arthritis and other problems. I admired you then so much. But only in the past year, with all that has happened to my own husband, have I had some inkling of what you must have gone through in Dad’s final years, and how hard that would have been.

I can only wonder in awe at your strength, your toughness and your love. We all benefited from those qualities, Mom, and that’s a legacy that will live on in the lives of your lucky children, your beautiful granddaughters and your great-grandchildren.

I miss you so much, but we give thanks today for your life and for all that you and Dad gave us. Rest in peace, my dearest. No one deserves eternal happiness more than you. 

Taking a break

I am on a brief break from blogging. Back soon. Meanwhile, these visitors to my backyard today joined a pair of king parrots (who wouldn't let me get near enough to photograph) in helping lift my dwindling spirits.

Sunshine Coast aphasia clinic – at last!

Off to Maroochydore this morning for the second in a series of eight Adult Communication Group workshops in Maroochydore. This clinic, specifically designed for aphasia sufferers and their partners, is a welcome and long-awaited regional initiative of the Queensland Department of Health.

The program has been developed by four speech pathologists based at various locations on the Sunshine Coast. Three of them are Interagency Speech Pathologists with Queensland Health and the fourth is from Eden Rehabilitation Hospital in Cooroy. Working in pairs, the four speech pathologists take turns organising and facilitating these weekly two-hour sessions, which are held in a meeting room of the Maroochydore Library.

Last week was our first session. Eight couples are participating. Most of the partners with aphasia have had a stroke which has caused their brain damage, but at least one person has aphasia as a result of a brain injury that damaged the language-generating areas of his brain. A seems to be the only person who has primary progressive aphasia. But all of us are living with aphasia, and it’s a lively and interesting group, with a wider age range than most groups we’ve participated in.

Some of the carers are very articulate, too, and frustrated by the fact that for most of them this is the first time they have had access to any group specifically designed for aphasia sufferers and their partners. Some said they and their partners had come all the way through the post-stroke hospital experience without ever hearing the term ‘aphasia’ used, without having their specific communication problems analysed and without being prescribed appropriate therapies to address their communication difficulties.

I think we will enjoy these clinics. And if the first two sessions are anything to go by, the sessions will be very well organised, too. The presenters prepare relevant and interesting activities and the handouts they distribute include visual clues as well as text. This shows their awareness that some people with aphasia can’t make much sense of written language.

Such is the case with at least one participant in this clinic, for example, whose command of oral language seems almost fluent by comparison with A’s. Yet he said he has difficulty making sense of written language. A, on the other hand, often has great difficulty speaking in even simple sentences, but he can read at almost his pre-aphasia level. Welcome to the Planet Aphasia**, where we all must now live.

In today’s session, we learned more about each of the couples – especially the partners who have aphasia. Each of them had to bring in an item to demonstrate an interest or activity that is or was important in their life. A brought in a couple of his scrapbooks containing clippings, theatre programs and other memorabilia documenting his 50+ years working in Australian theatre.

One man from France, married to a local woman, has lost most of his second language (English) as the result of his stroke, as well as having difficulties with his native French. He brought along a variety of small percussion instruments and led us all in ‘playing’ and singing several rounds of Frère Jacques (his name), which he himself could sing without hesitation – a phenomenon shared by A, who sings along on most days to familiar songs he has copied onto his computer specifically for this purpose.

Another participant brought in a selection of beautiful tropical flowers that he and his wife grow on their seven-acre property in the Sunshine Coast hinterland. One flower was a gorgeous tiger-striped orchid which trailed numerous thin tendrils some 10 cm long. He didn’t know the name of it but we took a photo which someone will try to identify.

One man showed photos of the pizza oven he had built in his backyard. He explained that he made pizzas for friends and family there, but for himself he mainly used the oven to prepare a classic Italian treat: slices of oven-dried pork, the exact name of which I can’t recall though when he said it I remembered having seen this in a delicatessen’s smallgoods section.

Everyone’s ‘object’ provoked good discussion, which was the main aim of the activity. And each week the organisers appoint one participant as timekeeper, whose job it is to make sure no segment of the agenda goes over time. That meant we had time left for each of our partners to mime or draw a given phrase which the rest of us had to guess – what we called our Spics ‘n Specs segment. Another volunteer makes brief notes of each week’s session and prepares minutes – no small task for anyone with aphasia who might take hours to write even a short paragraph.

What with morning tea and lots of chit-chat, the two hours fly by. I can’t help noticing how ‘at home’ I feel with these Sunshine Coast couples, too. Many of them live or have lived, like us, in semi-rural situations. And perhaps for that reason, this clinic has a different atmosphere to that of the clinic we attend in Brisbane. I don’t mean to imply the Brisbane clinic isn’t very good; it is. But not surprisingly, in Brisbane I always feel a little ‘at sea’, as we live a different kind of life up here on the Sunshine Coast than most of the people who attend that clinic. And whenever I go to the city for any reason, I tend to feel a little exotic. People there are friendly enough, but A and I have a different set of references, it seems. Up here on the Coast, however, we ‘fit in’ more easily. Maybe that’s more important to me, as a carer who needs to connect with others. But it’s a comfortable feeling of belonging. And with loneliness a hallmark of being a full-time caregiver, ‘belonging’ is no small feat.

Whatever the reason, we are delighted to finally be meeting a group of people from our region who, like us, have to learn to live with aphasia.

_________________________

** From the Planet Aphasia is the title of an excellent blog by the American carer of a partner who has profound aphasia and apraxia. Check it out; it’s well worth a read!

And it’s only Monday!

This morning I took A to the dentist for the first of several visits to have a tedious 'root canal' job ("...a dental procedure that replaces a tooth’s damaged or infected pulp with a filling. The pulp consists of specialised dental cells, blood vessels, tissue fibres and some nerve fibres located in the hollow space in the central part of the tooth..." – that’s a quote from the Better Health Channel, a useful Victorian government website providing health and medical information).

Background: We have just finished dinner last Tuesday in front of TV – A in his Superman chair, so called because it flies him up into the air at the push of a button. (Since I bought him a great little adjustable tilt-table on lockable wheels to use with this chair, the electrically operated recliner has functioned as sometimes-desk chair, hobby chair and dining chair, as well as TV chair and frequent site of daytime naps.) I forget what was on the menu on this night – lamb chops, I think.

As I am clearing away the plates in a bit of a rush, keen to be ready for Foreign Correspondent, A pipes up with: "I think I lost a tooth". I immediately think to myself: "Oh no, one must have fallen off his partial plate. Did he swallow it?" But he removes his plate (bottom jaw) and smiles at me. And no, it's not a bottom tooth that's missing; it's one of the two front teeth in the upper jaw! If I remember correctly, that not really HIS tooth either, but an expensive 'cap' attached to a tooth fragment. So where is the cap? And can it be re-attached?

After a frantic search through table scraps, I finally locate the gleaming little metal-backed porcelain curio. On closer inspection, I see that the cap must have been attached to the tiniest fragment of original tooth, which has now completely snapped off. Not surprising, really, given all the pushing, tugging and tubing that A's jaws were exposed to last year before the decision was made to do a tracheotomy at the end of his first week in hospital.

First thing last Wednesday morning, I ring the dentist’s office. They kindly agree to fit us in at about midday, to see what can be done. But there’s a hitch: we have long ago scheduled A’s Extended Primary Care review with the specialist nurse at our doctor’s office for this Wednesday morning. She only takes these appointments on Wednesdays, and this is our only available Wednesday. Every other Wednesday, we travel to Brisbane for A’s speech therapy clinic at the university. But this Wednesday there’s no Brisbane clinic due to uni holidays. So we can’t reschedule the EPC review. We will just have to rush from there to the dentist – about half an hour’s drive away.

And there's another complication. Wednesday is also the last day of grandson Sam’s one-week stay, and we have promised to take him to a movie in the afternoon. Never mind. The dentist should fit in between the EPC appointment and the movie, with enough time before the movie to grab some lunch somewhere. (Wise old grandma knows better than to go to the cinema with a hungry 12-year-old. The $12 we gave Sam for his movie-time ‘snacks’ would never be enough to fill him up without some lunch beforehand.) The three locations (doctor’s and dentist’s offices and cinema) are all in different towns spread out like points on a ribbon here in the Sunshine Coast hinterland. We will have to move quickly all day (not something A is very good at!)

Fortunately, it all goes like clockwork – greatly helped by Grandson Sam’s good nature and patience, even though the book he’s currently devouring got left at home during our hurried departure on Wednesday morning. But his Nintendo DS Lite made it into my bag, so he spends the waiting time at the doctor’s office happily enough, training his pet Nintendo dog to obey and do tricks. (See any transferable skills there? Oh well, it is school holidays.) Then the dentist’s receptionist lets him choose which TV station to watch in her waiting room.

The dentist manages to ‘bond’ A’s cap back in place with some kind of (we assume) non-poisonous cement! But she isn’t too optimistic about the chances of success. She warns me to watch carefully to make sure A doesn’t swallow the cap if it detaches again. At first I think she is concerned for the damage this might do to A's gastro-intestinal tract. Then I realise she is only suggesting that a swallowed cap will make a very expensive meal, because if this bonding doesn’t work, then a ‘root canal’ procedure, to dig out the remains of the tooth and replace it with a ‘post’, will be the only option. And that will all go much easier (and cheaper!) if we haven’t lost the cap, which can be re-jigged to fit over the post. (Is she suggesting I might somehow want to retrieve a swallowed cap a day or so later?????? Really, there are limits to a carer’s devotion!)

After a quick lunch at our favourite noodle bar (Sam bringing in a sausage roll from next door), we arrive at the cinema just in time to get priority seating before the doors actually open to the public – thanks to Granpa’s tottering status when surrounded by ankle-biters. Sam is very impressed by this, as we get to choose whatever seats we want. By the end of the day, though, we have been going non-stop for seven hours. Even allowing for the time A slept during the movie, we are all pretty tired by the time we get home.

Next day, Thursday, is Blue Care day, in which one of several different angels comes and spends four hours with A while I go off and ‘do my thing’, whatever that may be. In the first months after A’s hospitalisation, I would have to run around doing all the week’s errands, including groceries, as this was my only time away from home. But now A happily accompanies me on all such errands, provided I slow to a snail’s pace or, sometimes, ‘borrow’ one of the shopping centre’s disability go-karts (which he loves). So now during A's carer visit, I am free to entertain myself however I see fit for these four hours each week. At first, without a plan and unused to this freedom, I would drive around aimlessly, unable to decide how best to spend these sacred few hours. Now that I’m better organised, I usually go to a favourite nursery and browse the plants, maybe buying, maybe not – it doesn’t really matter. Very occasionally, I have lunch with a friend. Other times, I just walk by the river or in the National Park. It’s all good medicine.

On this Thursday, though, I am supposed to meet Sam’s ‘real’ paternal grandma (he has quite a few step-grandmas like me!) a half hour down the highway, where we will effect the grandson handover and have a quick coffee! That doesn’t quite go to plan, however, since my Blue Care angel doesn’t arrive until 15 minutes after the time scheduled for my highway rendezvous with Sam's other grandma. Thank god for mobile phones (how did we ever manage get-togethers without them?) The meeting place is quickly changed, with Grandma Grace (GG, as she’s known) offering to drive further in my direction. So I finally hand over the red-headed package safely, GG treats Sam and me to some lunch, and I head off with enough time remaining for me to call into my favourite nursery, Fairhill Native Plants, on the way home. (You can see one outcome of that day's purchases in another recent post.)

Arriving back home on Thursday after my time-off-for-good-behaviour, I walk in the door to A’s big smile, a gap showing where the top front tooth should be! Luckily, our Blue Care angel has retrieved the cap, which hadn’t survived the chicken sandwich, let alone the apple that followed. Obviously the repair was doomed. The next morning, after a couple of phone conversations with the dentist’s receptionist and A’s assurances that he is OK to manage the long sessions in the chair that will be required, we get two appointments this week for the invasive drilling and fitting that, we hope, will re-anchor that salvaged cap into the top jaw 'till death do us (or it) part'.

And the result today: Here we are this morning at the dentist's again. A is just settling into the chair when the dentist asks: “Is he on any blood pressure tablets?” My god, I realise, I don’t really know what two of his five daily tablets are for. (Caregiver-guilt strikes again!) I ring our doctor. The dentist holds the needle in her hand, poised to inject, but our doctor is on the phone to someone else. Minutes (it seems longer) go by. Finally I get the doctor's answer: Yes, one of those tablets is a blood pressure tablet. No problem, says the dentist, as she quickly changes to a different drug, one without adrenaline, which is OK to use with someone taking blood pressure tablets. But then the doctor, still on the phone, asks to speak to the dentist. ‘Has A had his antibiotics first?’ It seems that after mitral valve repairs, anyone undergoing an invasive dental procedure should begin a course of antibiotics at least an hour beforehand to minimise the likelihood of an infection which could make its way to the heart.

I should know this from my experience years ago taking my elderly mother to the dentist. She had the same problem but hated taking pills so much, she eventually stopped going to the dentist just so she wouldn't need to take antibiotics! I had even thought of phoning the doctor early this morning to check that very thing. But I rationalised that surely someone would have told us this at the time of the operation, or at the time of dismissal from the hospital. Did we ever get a list of do’s and don’ts after heart surgery? I guess we probably did. But A's massive post-operative complications overshadowed all the usual cardiac-related warnings we might have paid more attention to otherwise. Anyway, his supervising doctor in hospital never expected A to be able to come home, let alone undergo major dental work.

Well A got his antibiotics (probably not quite an hour before, but fingers crossed!) and I’ve added another no-no to the growing list of warnings in my caregiver’s survival manual. At the end of the week, we go back to the dentist for the rest of the procedure. Here’s hoping it goes too smoothly to warrant another post, except for before and after pictures.

Kangaroo paws

Just finished planting out kangaroo paws (Anigozanthos) along the top edge of the in-ground water tank - a good spot in full sun which is neither too wet nor too dry.

The two plants in the middle of the photo are Bush Pizzazz (deep magenta flowers) and the plant on the right is Bush Elegance (deep burgundy flowers on a plant that should be slightly smaller in overall size when mature). I also planted a fourth Bush Elegance across the rocky path, just out of view off the top right-hand corner of the photo. The last of this season's sage plants along the edge of the water tank are just about finished, but the compost I put into the holes for the kangaroo paw may give the sage one last flourish.

Back to school for Sam

Sadly, grandson Sam went home today. But we had happy times during his week-long visit – including our Valley Rattler excursion described in an earlier post and yesterday's trip to the cinema to see How to Train your Dragon, in 3-D no less. (In spite of a booming soundtrack, Granpa managed to sleep through a good part of the movie.)

Sam found lots to do at home, too. On this visit, he only managed to fit in one long swim. He usually spends hours in the pool every day when he visits, but this time we were so busy and on some days the temperature was a bit too cool to be tempting. Even so, he got in a good few hours while I weeded a garden bed alongside the pool.

 

On our last evening before Sam's departure, we drove down to an off-the-track part of Doonan for a bit of roo-spotting, along roads that have never before failed to yield a good number of wallabies feeding at dusk.

Unfortunately, this time we didn't see a single wallaby, though we did come face to face with a small group of beautiful young bulls calmly feeding. Sam tried to photograph them, but managed to get only one rump. He did get some lovely shots of a beautiful sunset, however, including this one of a truly spectacular cloud formation.

The Valley Rattler

Grandson Sam, Granpa A and I spent Easter Sunday riding the Mary Valley Heritage Railway from Gympie to Imbil and back, on a beautiful steam train known as the Valley Rattler.

The heritage railway has operated this colourful old steam locomotive pulling half a dozen authentic carriages as a delightful tourism initiative since 1998. The train takes up to 480 passengers per trip on a return journey from the old Gympie Railway Station (Queensland) to the inland town of Imbil several times a week. The outbound trip takes two hours and then there's a two-hour layover at Imbil. Here passengers can lunch at one of several cafes or pubs. Or by arrangement, the railway will provide box lunches that are collected on arrival at Imbil. Some people on our train brought picnics and there was plenty of space for casual dining around the Imbil station grounds.

Imbil was positively bustling. A small market offering local produce and other market-type attractions is set up along the historic main street, which still contains many of the original old buildings now turned into modest cafes and shops. After lunch and some shopping, passengers re-board for the return trip and another two hours of very pleasant sightseeing.

The train travels through picturesque bush and farming country in the iconic Mary River valley, crossing the Mary and several other rivers and creeks on the way. We stopped once on the outbound trip – at Kandanga – and once on the return trip – at Dagun – where we were able to sample and buy various local wares and refreshments in mini-markets set up specially for our benefit in and around the original station buildings in each place. A wine and cheese tasting was the highlight of the Dagun stop on the way back.

From the moment of boarding at 9.45 am until our return to Gympie at 4 pm, Sam had a great time, and so did we. Our beautifully wood-panelled car (Car 'C' No. 1038) was built in 1923 at Ipswich. It was originally a 1st class car that had been converted to 2nd class in 1984. Even though we hadn't paid top dollar for a seat in a 'club car' (the cost for the three of us was just over $100 plus lunch), it seemed to me as I walked through the other cars in the course of embarking and disembarking at various stations that ours had the most sumptuous and comfortable seats on the train. Maybe that was because we booked well in advance. (The train was just about sold out, I believe, and advance booking is a must.) We shared our little cabin with another threesome who were great company. And the long, well-sprung upholstered bench-type seats on both sides of the cabin could easily have accommodated another person each, so the six of us had plenty of space to spread out.

Some of the platforms presented a challenge to A, as there were no modern facilities such as ramps or lifts. Instead, sets of metal stairs without handrails were lifted into position at each stop. But there were always offers of assistance from staff and other passengers. Even so, Allen chose to sit out the last stop with one of his puzzles, while I ferried him samples of the wine and cheese on offer. It had been a long day, after all.

What the train lacked in modern amenities (I will spare you a description of the loo facilities) was more than outweighed by the very friendly and helpful staff, all of whom were in period costume and used equipment and tickets faithful to the early days of train travel in Queensland. I'm not sure but I think some of the staff are volunteers, too. And a few were what is sometimes referred to as 'disabled', but that label certainly isn't appropriate to describe the standard of their very capable service. So it wasn't only the facilities that were 'old-fashioned'; the service was the same – old-fashioned in the best possible sense. 

A small setback

Well  here it is 10.30 am and all three of us (the two wrinklies plus grandson) are showered, breakfasted and each at our screens. It's incredible how long it takes A and me to get organised in the morning since he fractured his clavicle (that's shoulder, for the anatomy-challenged among you!) This happened about nine days ago while A was maneuvering himself into position to begin an exercise routine. He had been doing his daily exercises independently for a while, but on this day he lost his balance somehow and toppled over, head and arm striking the edge of a bookcase or chair as he crashed down heavily onto the tile floor.

I came running when I heard the yell. Just getting him up was a challenge, but then I remembered that velcro-fastened cummerbund thing with 'grab' handles that we'd bought for his first weeks out of hospital. So after wrapping that belt around him, I managed to haul him up into a chair. At first I was most worried about the amount of blood splashed around, which seemed to be coming from a wound at the top of his head. But after checking him all over I realised some of the blood was from grazed skin near the left elbow.

Our Blue Care helper arrived just about then, and together we cleaned up A's injuries, which proved to be just flaps of skin rubbed off and no serious cuts. I was particularly impressed with the arrow our helper drew on the waterproof dressings, after we had applied these to the grazed skin areas. The arrow showed the direction in which to rip off each bandage later without pulling against the direction of the loose skin flap underneath. Even our doctor was impressed with that when we brought A in the next day to sort out why the shoulder was so sore and swollen.

X-rays showed a possible new fracture to the clavicle on top of an old one from A's youth, when he'd fallen off a bicycle. Swelling and soreness since then have confirmed this, so A must wear a sling for the next month or so, and has to do everything one-armed – which has greatly reduced his sense of independence, and also his confidence. But it's not too serious an injury, and has served to remind us of a big danger for someone of A's condition at this stage of life: injury from falls. We must be more careful in future.

Easter weekend with Sam

Our Easter weekend with grandson Sam has begun. Grandma Grace drove him up late this morning, and after lunch we got busy in the kitchen. Sam made a batch of chocolate crackles (lovely, they are, too!)

After lunch, Sam helped to trim a small hedge of alternanthera in the back yard. Then he helped his Granpa to do a few puzzles -- which they completed successfully (of course).

While dinner was cooking, Sam and Grandma worked on their computers in the studio. Sam's favourite game today was a game called bike champ (motor bikes not push bikes). Level 27 was the hardest. Afterwards we watched game videos on youtube on the computer Sam was using.

Three blind mice

Three blind mice, three blind mice....

See how they run, see how they run.....

Oh how I miss that dear old python who once lived 'upstairs'. While he boarded with us, we never had to worry about families like this one caught trying to sneak into the house. And I never had to run around catching mice by the tail (or trying to).

Tough plants in tricky spots

All around my garden you will find collections of 'filler' plants, little clumps of stalwarts that have managed to grow and even prosper in difficult spots where their more exotic predecessors long ago gave up the ghost. Living as we do in a sub-tropical climate where these plants are pretty mundane, they aren't often photographed and visitors rarely notice them. But I often stop when passing to admire their tenacity. And on occasion I have had to defend them when a casual observer has suggested I  'get rid of that thing'. No, I say, these are survivors who have served me well. I can afford to let them have a piece of otherwise unproductive clay. (Secretly now and then, I even throw them a dollop of fish emulsion!)

Here, then, are some plodders.

That's an alternanthera above – not sure which one because my 5-metre row of this little hedge came from offshoots given to me by a friend. It occupies a tough edge alongside the front terrace, in full sun for much of the day during summer and so sometimes quite dry, but also getting lots of run-off from the terrace in big rains. A lime tree and other shrubs nearby don't spare these plants much sustenance, but they soldier on regardless, giving a multi-colour display all year round where other perennials and less hardy annuals have failed.

This abelia thrives in two difficult spots. They, too, live in a patch that alternates between dry-as-a-bone and soggy-wet. Under one of these shrubs, in a narrow strip between the pool and a retaining wall, a duck once laid a clutch of eggs. Sadly they were raided by (I think) a lizard before hatching. The little bell-shaped white-and-pink flowers go on and on all summer and beyond.

Here are two versions of the same plant – a variegated dracaena or cordyline – which I keep for no reason except that they have thrived in a spot where it took a long while to establish my gardenias. 

And though the gardenias alongside are now doing well (their leaves even poking through the low-growing one above left), there is something about the delicate pastel colours of these strappy leaves set against the background of darker greens in the distance that continues to earn them their keep. But the shape is all wrong for this bed now, so this autumn I will take them out and use the tops to start a new clump in some other difficult spot.

I don't frankly know if the flowers at left are those of heliconia (false bird-of-paradise) or strelitzia (real bird-of-paradise), but given their modest single colour I suspect they're the false one. Once again, the plants are offshoots from a friend's tropical garden. But they're doing well under the dappled shade from a big old ti-tree where other plants have failed. This little clump alongside the parking area makes a pretty picture when viewed from my studio windows down there on the other side of the driveway.

Another real bonanza along the driveway is a tough old mandevilla vine, whose overhanging branches bearing big yellow blooms I must, regrettably, trim away very soon if we are to continue to be able to open and close the front gate.

Tibouchina in full flower

When I see a plant like this miniature tibouchina in full flower, I'm reminded I must acquire a better camera. (Or, you say, just become more skilful at taking pictures?) The colour of these purple flowers was much more intense in the early evening light than I was able to capture in either photo. Just about every bloom on the plant in the photo above aimed directly north, to drink in every bit of daylight.

The close-up shows flowers on a second plant, which went in at the same time a couple of years ago; these are more loosely distributed and the whole plant has a quite different growth pattern, probably thanks to the dappled shade from overhanging palm branches. In botany, as in real estate, what matters most? Position! Position! Position!

Crayfish nurseries?

Up at the top of our 1.3 acres, a long, long way from the dam at the bottom, these holes regularly appear. Many visitors have told me they are freshwater crayfish burrows, but what are the little critters burrowing for? The holes always appear in the same area, which is rather soggy and where I suspect some underground spring activity. But there's plenty of wet clay ground down near the dam. The clay that is piled up neatly around the top of the burrow is renewed regularly. If they're crayfish holes, what are they for? I once found one of the crays floating in my swimming pool not far from this area, so I know they do come up the hill this far. I just don't know why. Must have something to do with having young, I would guess.

The seven stages of caregiving?

I confess I have not lived up to my purpose in starting this blog – which was, 'to reflect about living with, caring for and being cared for in turn by a home, a garden and a partner with primary progressive aphasia. I have published many posts about the home and garden. But 'caring for' and 'being cared for' haven't figured too prominently among the entries here.

In the main, that's a good sign. It means life has returned to some kind of normal after the traumatic events of 2009. That year, or certainly the first three-quarters of it, revolved around sickness and the effects of impairment – physical, mental and for me especially, emotional. At a few low points in the year, I did feel as if that would be what the rest of our life would be about – certainly, the rest of our life together. And while I'm being honest, I also admit that once or twice for just a few minutes I thought it would have been better for Allen, and certainly for me, if he had died on the operating table or soon afterwards. But except for one terrible day toward the end of Allen's hospitalisation, those gloomy thoughts never hung around for a whole day. And mainly I refused to believe the outcome would be anything but this: I would get Allen home, and we would be OK. It was a long time before I dared to define what 'OK' might mean. But our life here would work its magic. Of that I was certain.

My work in the past ten years has required frequent uprooting, not permanent uprooting perhaps, but I have many times found myself arriving at a hotel room or short-term apartment, unpacking my suitcase, computer and briefcase and getting ready to hit the deck the next morning as...well, mainly, a problem-solver. Never mind what the problem was, and quite often it bore little resemblance to the contracted terms of reference of my consultancy, I could get in there and fix it. But even though to people who had no knowledge of those environments my aid work in developing countries appeared to be challenging, in fact with only very few exceptions my experiences were rarely earth-shattering or heart-wrenching. Out of the ordinary, perhaps. But pretty workaday nevertheless. Even so, the ability to deal with whatever they throw at you, while living and working in unfamiliar and sometimes inhospitable circumstances, without your usual support networks – all that was probably good training for surviving life-threatening medical events.

I also had one other tremendous advantage: a partner who isn't a quitter and, maybe most important of all, who is not so set in his ways that he can't adapt. In the 12 months since Allen was admitted to hospital for his second open-heart surgery (the first, 46 years earlier, having got him to 80, he didn't hesitate one minute when asked if he'd consider doing it again), I have met quite a few carers, most of them women, and the partners they care for. I have heard some inspirational but also several sad stories – of a man who would not agree to give up driving and so continued to endanger his and others' lives every day, of a man who could not bear to relinquish control of the family finances and kept changing and then forgetting bank passwords, of stubborn, proud men who could not bear to relinquish the role of Big Chief and so made their carers' jobs much more difficult. All I had to deal with was a man who, for several months, had terrible bugs eating through his breastbone and heading for the heart, and who couldn't eat, couldn't talk, couldn't breathe without a ventilator, was often delirious and couldn't understand much that anyone but me told him.

For me, if not Allen, those three months in hospital and then rehab weren't all that difficult. At least, that's how it seems in hindsight. There were battles I had to fight - and I have written elsewhere in this blog about those and about the peculiar combination of brain-related problems that resulted in some of Allen's medical complications. But now, one year later, I realise that those first months of my new role as 'carer' were were just the introduction to a whole gamut of emotional and physical 'settling in'. True, I was living away from home during that time and that was a wrench, but I had our children every day offering care and support. I had a hot meal and cosy bed waiting every night at my daughter's home(unlike the wife of the man in the next ICU bay, who spent months in a motel during her husband's hospitalisation only to have him die on the day he was due to be discharged). I also had daily messages of support from family and friends, some of whom came from China, Sydney, Melbourne and Tasmania to be with us for Allen's 80th birthday celebrations at the hospital. There were even messages from people in Allen's past whom I didn't know. (The email message sticks spread far and wide.) I had almost no responsibilities other than spending seven or eight hours a day at Allen's bedside. And since that was in Intensive Care there was always a dedicated nurse with us, and many of them were a pleasure to get to know. From them I even learned a range of useful bedside skills, becoming proficient enough at some of them to be asked more than once if I had had nursing experience in my past.

The daily commute from my daughter's house to the hospital was a drag, but I could listen to books-on-tape and take time to compose myself before ringing the bell every morning for admission to Intensive Care. On the way home in the evening, when I needed it there was time to howl in anguish, and still compose myself before arriving at my daughter's for dinner. And since I refused to believe Allen wouldn't recover, I focused always on the small signs of progress (yesterday 20 minutes of breathing without the respirator, today 40 minutes; today Allen moves from eating only mashed-up food to taking some minced food; today he lifts his left leg 10cm off the bed, and does it while the physio is still there instead of one hour later etc.) And so those weeks slipped by until, miraculously, I arrived one morning to find Allen sitting up, awake and alert, and found out he'd just been wheeled into a proper shower for the first time in two months. It seemed to me then that the home stretch was in sight. At about Week 8, supported by a walking frame, nurse and attendant, he actually walked a whole circuit of the Intensive Care Unit. By this time we had become such fixtures in the ICU that the eight or nine nurses and other staff on duty that morning all turned to watch his progress and, when he completed the circuit, erupted in a round of applause.

After all that attention and what seemed like heroic efforts on Allen's part, being banished to an ordinary hospital room in week 10 and told, 'You'll never take your husband home, so get busy and find a high-care place in a nursing home" was a terrible wrench (the one truly awful day I referred to above)! Thankfully, with our surgeon's help we proved that wrong. And after two more weeks in a rehabilitation hospital, where Allen's main achievements were that he learned to walk using a conventional small frame on wheels and he began to shake off the effects of the cocktail of anti-depressant and anti-psychotic drugs he'd been given while in Intensive Care, we finally made it home. And that was where my carer odyssey really began.

Most of us have heard about the seven stages of grief. Maybe caregiving, when it occupies a large amount of your time and energy and ties you inexorably to being available to one person 24 hours a day, has stages that are not that dissimilar. First comes shock and denial, though in the case of a hospitalisation that should have been over in a week or two, the threat of possible loss went on hovering in the background for three months. I guess I kept denying it, and maybe that was my salvation. Anyway, I had experienced total shock a few years earlier, when my mother had her first stroke and I had to give up all hopes of getting her an Australian visa and accept that I would not be able to be near her in her final years. At that time, too, I remember too well going through the next stage of grieving - pain and guilt - fearing that I might have contributed somehow to my mother's trauma by putting her through the agony of having her visa application rejected. But in this case, with Allen, the guilt I experienced that was harder to shake off was the thought that maybe I had influenced Allen to have this operation, and had not sufficiently researched the risks.

Next stage, frustration and anger, typically includes the need to blame someone else for this aftermath. I suppose I directed most of my anger in the first few months at those doctors and administrators who tried to persuade me to give up – to stop the antibiotics, and later, to put Allen into a nursing home. That anger served me well, since it prompted me to defiance. Less useful, though, was the anger I sometimes felt after we got home toward Allen and his neediness. Inevitably, those feelings would take me back to guilt, especially if I got stuck into a bottle of red wine late at night, which was all too easy to do when the house went quiet after Allen went to bed.

So it was very easy to slide into the next stage of grieving: depression and loneliness. This was made easier by our relative isolation up here, more than an hour's drive from our children and not within walking distance of any services or shops. Admittedly, we live in a beautiful semi-rural environment, and we're only 20 minutes away from a first-class tourist destination with every shopping and other facility we might want. But especially in Allen's first months at home, taking him out was difficult and eating anywhere but home not an option. And with few old friends living nearby, I was no longer so sure I would manage physically or psychologically. This is when, say the grieving guidebooks, "you finally realize the true magnitude of your loss, and it depresses you".

In my worst moments, I felt I had lost two important pegs in my life: my independence and my best friend. Of course, I hadn't actually lost Allen, but I had lost (or so it seemed in those first months at home) much about him that I had come to rely on: intellectual companionship, a ready wit, a keen problem-solving attitude, initiative and enthusiasm in household maintenance, even someone with whom to share the cooking and cleaning, not to mention a shoulder to lean on now and then – in short, a husband.

The grief counsellors say that you eventually begin to adjust to life without your dear one – they call this the upward turn. I, however, just had to adjust to a different life with mine. After all, I still had a husband. I just had to get used to the different person he had become. Or rather, I had to learn that my husband was not a different person, even if there had to be some differences in how we lived. I also had to find ways to get back out into the garden, both because I needed to be able to do this if we were to go on living on this large block, and also because I knew the garden would be my best therapy. And since Allen couldn't do many things for himself in those early months and so couldn't be left alone in the house, I had to find a way to keep him safe while I got on with doing things I liked or that had to be done. Mostly, this meant learning to take things slower, not expecting to get everything done in a day and getting more pleasure from simple things. All in all, not a bad lesson to learn at the onset of retirement. It started simply enough with picking mulberries together, which I called Sharing the load when I wrote about it in this blog. But in fact, the load got a lot lighter as a result of my change of attitude.

Now, one year after Allen first went into hospital, I think I have finally arrived at the final two stages of grief: reconstruction and working through, and acceptance and hope. Of course, it helps enormously that Allen's physical stamina and general health have improved miraculously in the past six months. He has become something of a pin-up boy to the people who've worked with him. Our return visit to the ICU a few months ago, just to show him off, had doctors and nurses staring in disbelief. His geriatrician marvels that Allen's scores on all the standard psychological tests are almost the same as they were a year ago, even though brain scans show the 'holes' in his brain continue to expand. And from someone whose best efforts at drawing a face toward the end of his hospitalisation just nine months ago resembled those of a three-year-old (see picture on the left), Allen has progressed to writing brief letters to family and friends, he can operate a number of aphasia-specific therapy programs on computer, and he can read just about anything. Indeed, he is back to trawling the shelves on our weekly visits to the library, and recommending books he thinks I might enjoy.

We both know but don't dwell on the fact that sometimes Allen can't appreciate the complexity of a complicated plot or argument in a novel or current-affairs program. But it doesn't detract from the pleasure he gets from reading. In fact, one of the first independent things he did while still in the ICU was to pick up a newspaper I'd brought in and hold it up as if to read – upside down! He just needed to feel the comfort of that familiar act, and to believe that one day he would read and write again. As soon as we got home, he asked me to write out the alphabet on a strip of paper, which he kept on his table, practising letter by letter until he could again recognise and print all the letters, albeit in a shaky hand. He can no longer participate orally in lively dinner table discussion with friends and family, but that doesn't stop him enjoying being part of the scene. He can't remember more than a few steps in any sequence of activities and finds it difficult to execute relatively simple tasks that he once did by rote. He has trouble 'reading' a clock to tell time, for example. 'Half past' and 'quarter to' don't seem to make any sense to him, and he can't remember the different roles of the big hand and little hand, so he's as likely to say it's something after 6 when in fact it's 3.30. He knows that is wrong, but can't figure out why.

We have both accepted, it seems, that these things don't matter that much – to us, anyway. In fact, the range of things that don't matter to us is pretty astounding. Allen really has no idea at all about money, how much we have to live on, what bills I pay and what accounts I manage. If we're in a shopping centre, I might give him money and send him into a newsagency to buy a paper, where he will decide whether to get The Australian or The Sydney Morning Herald. Those are probably the only commercial transactions he has had in 12 months. Anything more than that would just confuse and upset him. But he is still better than me at selecting the best fruit to buy and making sure we get everything that's on the shopping list. And he can read and understand everything I've written here, even if it takes him a week of difficult effort to write as much as a paragraph himself.

We seem to have found "realistic solutions to our life-problems". We are "reconstructing ourselves and our lives and dealing with the reality of our situation: finding a way forward" – all things which the experts say characterise the final stages in grieving, too. People who don't know us that well still express concern for my or our 'fate'. Allen, after all, has a form of dementia! And I am stuck at home caring for him! That's what our situation looks like. We are moved by their anxiety on our behalf, but sometimes also amused. I want to tell them I feel just as bad for them, because they are still out there, part of the rat race. We, on the other hand, live quietly day to day, and do pretty much as we please, when we please. Allen is relearning how to swim. I have taken my sewing machine out again after years on the shelf. OK, the garden isn't quite up to scratch. But we have time to get pleasure from looking at it every day. We laugh an awful lot over Allen's 'category' errors. And here am I, doing what I never could find the time to do before caregiving became my way of life: WRITING.

I know in many ways we have been very lucky. But my message to carers is this: whenever you possibly can, try to enjoy some of it.

The dam is full

Our water pump's intake valve is bobbing nicely out there in the deepest part of the dam at the bottom of our block, thanks to two weeks of rain totalling 630mm (about 25in). Water flows down to our valley from nearby Mt Panorama, feeding half a dozen or more dams before it reaches ours.

All of them must be overflowing by now because the often dry creekbed below our dam is not yet the raging torrent it can sometimes become, but it's flowed steadily for more than a week now.

Good to know my 2010 garden will be well watered, even if the price we are paying right now is murky-coloured water in the toilet! That's because we pump dam water up to a holding tank at the top of the block, from where it flows by gravity down to the cistern as required. This saves precious rainwater for more important uses. It also means the cistern doesn't lose its water supply if a power failure should shut down the pumps for a while. Fortunately, that doesn't happen very often any more. But it's something you must prepare for when you live in the countryside in a region where tropical storms can cause occasional havoc.