20 July 2010

Pumpkin and pastry

There is so much happening here that I have hardly been near the computer in days. Well, that's not quite true, but it is a convincing opener, right?

JW is making her annual winter visit. It's always lovely to have her company, not only because she gardens, vacuums and today, even did my ironing! No. The fact is she and her faithful pooch Lik-Lik are lovely company. We have loads of good talk, good food and the odd (i.e. daily) drop of red or white.

JW's been instructing A in using watercolours so he can add some colour to his drawings. Tomorrow we are all off to lunch, then Thursday is A's final day in the 6-week rehab program, and Friday his first art class. On the weekend, Reality Bites begins. So I guess there is quite a bit going on – even without counting my trip to the tip today with a trailer-load of prunings and then a stop at the landscape supply place on the way home to fill the trailer with hoop pine mulch. Later this week we will spread that on a section of garden that JW and I cleaned out earlier this week.

Last week while cleaning out the vegie garden we harvested the last of last year's pumpkins – three of mixed size that I found under the winter weeds. Here are two of them, in an arrangement that JW photographed as a fit subject for A's next watercolour project.

This afternoon I turned the art project into a pumpkin pie to take along tomorrow, when we have lunch with Dee, a very special Tasmanian friend who is wintering in nearby Noosa this month.

And since I was making pastry, I thought I might as well double the quantity and make a quiche for tea (see below). It was a spinach and ricotta quiche, with a few trimmings of mushrooms. But the frozen spinach more or less disintegrated during preparation, so the final result was a delicate light green in colour. Quite pretty, and tasty too. But with colouring better suited to a Christmas meal, I thought.

If this has been a very quotidian post, part of the reason is that I'm writing to stay in touch with daughter ZH, who is somewhere in Israel, attending a conference. This is her first overseas trip without hubby for company, so all the mundane news is partly for her benefit.

19 July 2010

Come meet us in Maroochydore

Seven couples here on the Sunshine Coast have got together to support each other in dealing with aphasia, a communication disorder that affects a person’s ability to use language to communicate. We're calling ourselves the Sunshine Coast Aphasia Group, and we met earlier this year when we participated in that clinic, organised by Sunshine Coast Speech Pathologists, which I've written about earlier.

Aphasia most commonly occurs as an after-effect of stroke. For five of the seven couples in our group, that is how one partner acquired aphasia – through damage to the language-generating part of the brain as a result of one or more strokes. But other events may also cause aphasia. One person had an accident which resulted in damage to that part of the brain that controls language. And of course my own husband has a rarer version – primary progressive aphasia – in which the language-generating areas of the brain begin to deteriorate for no apparent reason. Unlike with Alzheimer’s and other forms of dementia, primary progressive aphasia affects only one part of the brain. So as is the case with other aphasia sufferers, my husband has not lost his intelligence or personality. But he is greatly frustrated in his ability to express himself and must struggle endlessly to make himself understood.

Aphasia can take many forms. In my husband’s case, speaking and writing are greatly affected, but he can read quite well. As with many aphasia sufferers, he can also sing along to any song for which he has the words! But the simplest commercial transaction in a shop is a major challenge. That’s because his ability to work with numbers has also deteriorated. So even though he once managed large budgets for theatrical productions, now he has difficulty buying a newspaper, and answering the telephone requires him to read from a printed script.

Aphasia presents differently in every person, however. Some people cannot read at all; many cannot write. Not surprisingly, people who have aphasia may withdraw from contact with the world, or even from family and friends, unless they receive the right kind of support. Often they must learn to engage with the world in a new way. Hence, initiatives like the Sunshine Coast Aphasia Clinic are a godsend for aphasia sufferers, and for their carers, who have a vital role to play in helping maintain the family’s quality of life.

Our group was pretty special in that it happened to include seven couples who were all eager to make contact with others who were struggling with this affliction. For most of us, this was the first time we had the opportunity to share our stories of living with aphasia, and to learn how others cope with the daily challenges we all face. It’s very common for people who come into contact with an aphasia sufferer for the first time to assume the aphasic person is intellectually subnormal, because of the difficulty persons with aphasia may have in expressing themselves. But among ourselves, we find we can relax and have some fun with our peers without being judged.

As our eight 2-hour sessions came to an end, the group decided we would continue to meet socially once a month in a public place. Anyone who is living with aphasia would be welcome to join us. These will be social gatherings, not meetings, but the Australian Aphasia Association, which some of us have joined, will add our group to their list of regional aphasia support groups that is circulated in the organisation’s newsletter, Aphasia Link. That may help other persons with aphasia and their partners or caregivers to link up with us.

The Sunshine Coast Aphasia Group held its first coffee morning on Monday, 12 July. We had a great morning and were still lingering in the cafe's outdoor eating area at midday! If you have aphasia, or are supporting someone with aphasia, or even if you'd just like to know more about aphasia, you are welcome to join us at our monthly coffee mornings on the 2nd Monday of every month at Banjo's (Woolworths Complex, 50 Plaza Pde, Maroochydore) at 10 am. It's not necessary to book, but if you want more information you can contact me by email (chartreuse at ozemail com au). I can then give you my telephone number, if you'd like to speak to me or another member of our group before coming along.

Allen and I are pictured here with two Queensland Health speech pathologists (Cathy on the left; Ruth on the right), and other members of our new Sunshine Coast Aphasia Group, whose friendship and camaraderie A and I value greatly. (Cathy and Ruth were two of the four 'speechies' who organised and facilitated the 8-week clinic that initially brought us all together.) I have not shown faces out of respect for people's privacy. But we are continuing to meet every month, and others are welcome to join us!

If any readers would like more information about aphasia, or about our monthly social gatherings in Maroochydore, please contact me at "chartreuse at ozemail com au" (making the necessary symbol substitutions for 'at' and adding in the full stops.) I'll get back to you then with my personal contact details.

10 July 2010

A stormy winter evening

Just a few hours ago, I walked around the garden and snapped a few shots in the late afternoon light – made more dramatic by a stormy sky presaging a winter storm. And now the rain as started. So the afternoon sky wasn't lying. And once again, the tanks and pool will be overflowing in a season when we are usually using water sparingly, and thinking about topping up the pool. But here are a few things I came across in the garden today.

This poolside hibiscus (Bruceii) refuses to accept it's the end of the season. It keeps flowering and flowering. But next week when I get back down to that area to finish pruning the vegetation around the pool (I'm about halfway done that job), I'll be cutting back these 2-metre tall branches to encourage a bushier habit next summer. It's such a shame these gorgeous flowers don't survive as cut flowers. But I can at least float a few of them in a bowl of water when I chop back the plant. They're too splendid to go immediately to the compost.

Another bit of dramatic colour against the evening sky is this bougainvillea (in spite of its orange to apricot colouring, it is actually called Californian gold). I trimmed the plant recently, and most of it is securely attached to a pergola. But this shoot stubbornly pushes up toward the winter sun.

Earlier in the day I had photographed these snow white flowers of one of my favourite trees. They are ti-tree blooms, dripping with nectar. I don't know the precise variety because the tree was already here when we bought the house 15 years ago. The flowers have just opened in the last day or two. I expect we'll start to hear the humming of swarms of bees that usually gather nectar right alongside the parrots that feed high up in the tree's canopy, which you can see below.

As a matter of fact, there appears to be a beehive at the very top of the tree. I think about it every time I walk up the driveway, right under this spot. I hope it never comes crashing down!

Pink is a prominent colour in my winter garden. Many of the bushes I trimmed during the annual winter pruning are just now sending out new growth, which is often tinged pink. Below left is one of the Brazilian cherries, and in the foreground below the trimmed branches of Rhaphiolepis 'Apple Blossom' are just beginning to flower. This is not really an apple, of course – we can't grow apples or pears here – but the blooms are very like apple blossom.

Two types of produce caught my eye today. First, I picked up the last three little jap pumpkins. These had been left on the ground after I finished cutting out all the two-year-old vines that had taken over one of the vegetable beds and spread up onto the hill above, among the bananas. In the last couple of weeks we've enjoyed two more pumpkins – in a pumpkin and leek soup, in a particularly successful pie and roasted in the pan with a big leg of lamb.

 And then there are the grapefruit! They're big, they're numerous and they're almost ready! In just a few days, I'm sure, we'll be eating the first ones. This is the best crop we've ever had, and if the flavour lives up to the looks, we'll be starting our breakfasts with grapefruit for the next month or more.

Just as I was about to go back indoors, I looked up toward the western sky, where the gathering storm clouds were putting on quite a show in front of the setting sun.

To my surprise, I spotted a new home going up on the top of a hill to the west. You can hardly see it on the horizon, but what a fabulous view there would be from up there. I'll have to get my field glasses out tomorrow for a closer look.

04 July 2010

Aphasia. What a shame!

A and I have had quite a long time (about four years) to come to terms with the scourge of aphasia, and how it can blight its victims' lives. To be sure, we had even greater life-threatening medical issues to deal with one year ago. But as difficult for both of us as A's three-month hospitalisation and slow recovery from open-heart surgery were, the challenges of all that never had as damaging an effect on our relationship or our quality of life as does our ongoing battle just to be able to communicate with each other.

One reason A's inability to express himself readily in speech and writing affects us to such a degree may be that for all of our adult lives we have both placed a high premium on oral and written communication. Now, however, that critical aspect of our life together is undermined daily and in more ways than can easily be explained or imagined.

Here is just one small example. Over six weeks, A is participating in a 'Falls prevention' program at a nearby rehabilitation hospital. I drop him off there on two mornings a week, and on each of those days he has four hours of intensive therapies – physiotherapy, occupational therapy, counselling, group discussion, even basic tai chi! This is the first time in more than a year that A participates in something on his own. As I wrote in an earlier post, other than time spent with a Blue Care carer, until now A has not followed any program or taken part in any activities in which I did not participate. So this is a big breakthrough for us both.

I know A is really enjoying being part of the rehab group and 'doing his own thing'. When I pick him up four hours later, he is bursting with enthusiasm about this or that part of the day's program. But it's a good thing that he comes away with a few handouts giving some idea of the content covered that day, because all his attempts to tell me about the day's activities usually end in an exasperated groan of frustration on his part. He just cannot find the words he needs for what he wants to say or describe. And I am on tenterhooks the whole time, suspended there, trying to understand what he's desperately striving to tell me. We play 20 Questions, me interrogating and guessing, him sounding out meaningless syllables that seem to him to be related to whatever word or words he's searching for.

A can usually communicate only a small amount of whatever message he is trying to convey, and almost nothing of any subtle or humorous asides that he might like to include. And unlike for stroke victims who may improve with time, our situation is never likely to get better. In fact, it is most likely to get worse.

"Yes, aphasia is a terrible affliction. But to me, there is no shame involved, only sadness."

Far from wanting to suffer all this in private, however, I often find myself wanting to scream at anyone prepared to listen. At the very least, I'd like more people to understand something about the condition and how difficult it is to live with, especially when everything else about us may seem to the casual observer to be quite normal. I'd like people to stop telling me how great A looks, and instead spend some time trying to talk to him, or at least ask me what they can do to help. I know some people prefer to remain very private in their battle with aphasia. But for myself I just cannot understand why anyone would be worried about letting their name be used publicly when it might help to bring this debilitating condition out into the open, where others may begin to understand it.

What shame could there be in being recognised in your community as people who are dealing with aphasia? Yes, aphasia is a terrible affliction. But to me, there is no shame involved. Only sadness. But who does it help if we go on trying to deal with it behind closed doors? Mightn't it be easier to bear if more people around us understood what we are dealing with and could help? Who knows if sharing our story wouldn't help someone else who is just starting down the road and searching for ways to cope.

I know that no two experiences of aphasia are exactly alike, so I guess everyone must deal with aphasia in their own way. But some kind of acceptance, some willingness to say out loud or in print, "Yes, we have this problem, and here's what you can do to help", seems to me to be a good first step to take.

01 July 2010

Pandanus and poinsettias

My faithful friends among you will know that I'm having trouble getting back to regular posting. So this one is a bit of a cop-out. No great thoughts here. Never mind. Maybe I'll get the serious blog habit back soon. Meanwhile, here goes...

A and I are spending a good deal of time outdoors, now that (a) our weekly trips to Brisbane and Maroochydore for aphasia therapies have concluded and (b) an unseasonal spell of (relatively) cold weather appears to have passed. Even A has got into some gardening – albeit in a gentle manner. He had just finished raking all the dead leaves that fell onto this little path from an overhanging tulip tree, when he sat down to enjoy the last of the afternoon sun.

Anyone who's not from these here parts mightn't recognise the basketball-size fruit in this photo. These don't normally fall from the tree whole, like this one we cut down. Just as well, because this particular example weights 3.5 kilograms (that's just under 8 pounds). Left alone, the fruit ripens further, until it splits open while still on the tree. Then the individual segments that make up the fruit drop to the ground, one by one. This probably gives the large seeds contained in the segments a better chance of rolling away from the tree and finding a spot in which to germinate. Even so, with each fruit containing several dozen segments, and 20 or so fruit on even a small tree, that's a lot of fist-sized kernels to pick up (or trip over). Aborigines had a way of using these fruits as food, but I haven't tried them yet. They also used the long, tough, strappy leaves for all manner of woven goods (mats, baskets etc.) The tree's name? Pandanus.

My garden has about six pandanus trees in various sizes, including this large one that overhangs the pool pump house. Thankfully, I haven't yet noticed on my trees any sign of the dieback that is killing a lot of pandanus growing in areas like ours, where the cause of the disease – a North Queensland insect called the planthopper – doesn't have any natural predators.

In another part of the garden, an annual display I always look forward to is again thrilling us every afternoon, when the sun's last rays shine through the nearly transparent and spectacularly red 'bracts' (or leaves) that surround the otherwise insignificant flowers of the poinsettias. I especially love this somewhat neglected, and admittedly straggly, specimen halfway down the paddock.

Every time the flowers are finished, I debate whether or not to prune the 2 metre stems of the above plant back to some sensible size, as the gardening experts always recommend. I do that to the poinsettias growing in other parts of the garden, including some I keep in containers for a Christmas display and a few others, like this pink variety near the back verandah.

But somehow I can never bring myself to take the secaturs to that rambling specimen growing out from the base of a large old gum tree in the paddock. It's a wild and beautiful plant, reaching out from under leafy mulch on two sides of the tree, which also has a large philodendron climbing up its trunk and a few other trees and bushes alongside, making up a delightful little ecosystem. One year, a big old kangaroo often slept away his days in a nest-like cavity under all that vegetation. Well, as far as I'm concerned, that particular poinsettia can keep its long waving stems. And in return, every year it puts on a magnificent display, those nearly translucent fire-engine red bracts seeming almost suspended in the bright afternoon sunlight, or glowing rosily as in the photo above, taken just after dawn.

Most poinsettia bracts radiate around their little central flowers on a flat plane. But on some parts of my renegade plant – or maybe there are several plants growing closely together, because these flowers only appear on one side of the big tree – the bracts, like the stems, have gone a bit wild. The result is an almost dahlia-like bloom – yet another reason this poinsettia deserves to be allowed to ramble as and where it chooses. My garden has room enough for a few rebels.

About me

My photo
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.