26 April 2010

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.

13 April 2010

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!

12 April 2010

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.

09 April 2010

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.

08 April 2010

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.

07 April 2010

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. 

03 April 2010

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.

02 April 2010

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.

01 April 2010

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).

About me

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I started this blog in 2009 when I became a full-time caregiver. My husband had been diagnosed a few years earlier with primary progressive aphasia. Over the next four years until his death in 2013, we went on a journey of discovery about this rare condition. My blog is about what I learned, how we both coped and how the journey deepened our love and appreciation of each other. Allen’s journey is over, but mine goes on.