06 December 2010

PPA and hospitalisation

I've written about this before (see Aphasia sufferers: Avoid hospital, if possible!). But something I don't know what has prompted me to summarise it here again.

My husband, Allen, was diagnosed with PPA in 2006. Annual scans since then show that the left side of his brain is deteriorating at a modest rate. And his communication competence has deteriorated accordingly. Even so, the extensive regime that he follows of various self-designed therapies of intellectual activity appear to be paying off, according to the gerontologist who treats him. And last month's annual visit to the specialist, following this year's nuclear scans, resulted in a big 'thumbs up': "You've made my day", was the gerontologist's summary. It might well have been otherwise, however.

In 2009, Allen required open-heart surgery to repair badly malfunctioning heart valves. The heavy sedation required for that invasive surgery, perhaps made worse by many hours on a heart-lung machine, had a catastrophic effect on Allen’s compromised brain. He experienced serious post-surgical complications. Initially, Allen did not wake for several days after surgery. When he did finally regain consciousness, he experienced epileptic-type fits. So additional medication was used to control those reactions, and this resulted in more days of virtual inertia and serious breathing problems. A tracheotomy had to be performed so Allen could be intubated, and a Pacemaker was inserted a few days later. After five weeks, further surgery was required when his original wound became infected and the surgical reconnections of the breastbone unravelled.

In all, Allen was nine weeks in Intensive Care, a further two weeks in hospital, and two more weeks at a rehabilitation hospital (though access to the latter was initially denied him, in view of his inability to fully cooperate with therapists; only the intervention of our surgeon secured him a place in rehab). Throughout Allen’s hospitalisation, many of the health professionals who treated him did not appear to allow for the complications that resulted from PPA brain damage. Eventually, after the second surgery that screwed together the damaged breastbone, Allen’s treating physician did give instructions that Allen should be allowed to do things at his own pace. This meant weeks of continued inactivity under full-time supervision of an Intensive Care nurse, and no rushing Allen to ‘get up on his feet’. Even so, it was weeks before doctors and nurses agreed NOT to give Allen sleeping tablets at night, as these had a devastating effect on his consciousness for at least 24 hours afterwards. However, they would not agree to stop giving him anti-depressants and, later, anti-psychotic drugs, even though the latter produced hallucinations that continued throughout rehab, where he was gradually weaned off all mind-altering substances.

It seemed to me that Intensive Care protocols made no allowance for the effects of brain damage on other medical procedures – even though we were actually warned about this in our pre-surgical briefings! After the operation, Allen was forced to try and stand and then walk long before he was sufficiently alert to cooperate – which placed great strain on his wound and, in my opinion, may even have contributed to the detachment of surgical repairs to the breastbone. Physical therapists did not vary their routines or timetables to take account of Allen’s good and bad periods of wakefulness. If he couldn’t manage the required movements at the time allotted for his morning therapy, often because of the effects of sleep medication, he would miss out on therapy for that day. There was effectively NO speech therapy administered in hospital or rehab – other than so-called ‘swallow therapy’ to determine what type of food he should eat and to ‘test’ his level of communication. Other than good physical therapy in rehab that resulted in his being able to walk with the help of a walking frame, the only useful therapy Allen received throughout his period in hospital or rehab was what I provided during long days at his bedside, seven days a week. Had he not had a partner to do that, he would most probably now be in a wheelchair in a high-care nursing home (which, at the time of his discharge from hospital, is where his physician told me to place him!)

We know that PPA damage is progressive, and that things may continue to get worse. But hospitalisation and surgery, far from being a remedy for a PPA sufferer, may well be a ticket to a nursing home, or worse. So before you or a partner who suffers from PPA undergoes any surgical procedure, be sure to do a lot of investigating and talking around. Make sure your surgeon AND relevant hospital staff understand something about PPA and the likely effects it may have on routine medical procedures. Find out what medication is routinely used in post-surgical treatment, especially in Intensive Care wards, and what if any effects such medication may have on a compromised brain.

We were lucky in having a surgeon who was totally supportive of Allen’s needs and, most importantly, who recognised and validated my expertise in interpreting Allen’s behaviours and responses and my knowledge about PPA. Initially at least, I did not enjoy the same relationship with the other health professionals who treated Allen through long weeks of post-surgical hospitalisation. And if your partner suffers from PPA, be prepared for the fact that if you have done the minimum amount of research about PPA that caregivers usually do, then you will probably know more about the condition than anyone who treats your husband in a routine hospital environment. So you, as advocate, may well be your partner’s most important healthcare provider. And this may be a tiring and thankless job, since health professionals’ initial response to you may well be hostile. You may have to fight your way into ALL consultations about your partner’s care – including being present when ‘rounds’ are done (initially, I was locked out of the ICU ward at these times). The only medical professionals who really know and understand your partner’s needs – e.g. your family doctor (if you’re lucky), your gerontologist or other specialist – will not be accessible to you and your partner in hospital. So your partner may be treated as if he or she is demented, which is distressing. Or just as bad, information, questions and/or instructions may be directed at your partner, which he or she either cannot understand or remember, and which he or she cannot tell you about, if you weren’t there at the time.

It is a battle to get best-practice treatment for a PPA sufferer in hospital. And I’m told by friends who have had a stroke or whose partner has had a stroke, that the same applies to most aphasia sufferers. So even though we who live with PPA are prepared for the fact that our lives have been turned upside down and it’s a constant battle to retain communication function, it’s an even bigger battle if you also have to undergo what might otherwise be a routine surgical procedure. Be prepared for that, be vigilant throughout the experience and then fight your way back to health afterwards, even if the medical experts give up on you.

11 November 2010

Spring cleaning in Doonan

After many months of mainly pleasurable slogging, interrupted by a two-week trip to NSW, I can finally claim that the garden is (more or less) under control. Oh dear. That sounds too much like a statement from the anal-retentive school of gardening! Let's say, instead, that these days walking around my undulating 1.3 acres of greenery gives me pleasure, not pain – and that certainly wasn't the case a few months ago, where every tour of the garden left me feeling I would never be able to claw back the mountain of weeds that had overwhelmed so many garden areas.

First, the stairway down to the so-called 'camping platform' is relatively weed-free, and the weeping lilly pilly hedge, the planting of which was Allen's last big pre-operative effort, is now well mulched. Admittedly, that nice little bit of level ground near the pond that we refer to as the camping platform has only ever seen tents twice, when the guest-rooms overflowed on two Christmases. But I live in hope that one day grandchildren or other young visitors will set up their tents down there to enjoy some peaceful sunsets. Meanwhile, we ought to refer to it as 'the badminton court', as that's what we mostly use it for in summertime.

The pool surrounds, too, are all weeded, and the annual springtime show has begun. At the moment, it's bougainvillea. But the humble abelia (bottom right in the photo) and showier gardenias will do their thing a bit later in the season.

Just in case, dear reader, you don't appreciate the amount of toil and bother this has all required, here's a peak at how the above area looked before the big spring clean-up! And that's not just any old weed in this shameful photo. Most of what obliterated all the plants around the pool is a dreadful vine with barb-like seedpods. The most I could do in any day's weeding was about two metres of garden! And each day before coming indoors, I'd have to unpick hundreds of the sticky weed seeds off all my clothes and gloves. That's subtropical gardening for you!

Some of the less showy corners haven't been overlooked either. This little pathway leads from the vegetable garden below, up alongside a small watertank the contents of which are used to top up the pool, to an area alongside my studio where we keep our wastebins etc. It's a route I often take, but until now it's been a slippery bank of muddy grass, and more than once I've nearly tumbled in my rush to get from one place to another. So I decided to use pieces of preserved pine and some of the gravel that was left over from the new drains that handyman Neville installed under my raised vegie bed, to make myself a set of secure little steps here – part of my ongoing 'make the garden safer and easier for old age' program!

When we finished draining and raising that vegie bed, to take away the water that pours down onto this area from the hillside above during tropical downpours, this is what the vegie garden looked like.

The next photo shows what it looked like this morning. So it seems those drains are working well. The 40 sugarbags of mushroom compost that I mixed in probably helped, too.

Incidentally, the white chair in these photos is one of four that I picked up at the tip shop for a few dollars. I've placed them in strategic locations around the garden where Allen might need a short rest while taking his exercise. He can pretty much walk around the whole block now, thanks to four different sets of railings installed for us by Maroochy Home Assist.

The Home Assist Secure service is a State Government program that helps people who have disabilities continue to live in their own homes. Allen became eligible for this assistance when an Aged Care Assessment Team determined that his post-operative problems entitled him to 'high care' status. That ACAT assessment was intended to convince me that Allen should be placed in a nursing home. Luckily, it failed to do so, but it has proven to be a useful label for other reasons. 

So far Maroochy Home Assist has built us access ramps over door sills (when Allen was first home and needed to use a wheelchair), adapted our shower so that I could roll Allen in and out using a shower chair (that's also when he was first home – now he walks in and out on his own steam) and installed numerous 'grab rails' in the bathroom and toilet. They also send someone to clean out my rain gutters whenever I request it, and a plumber came to give me advice about our sewage drains. If there are materials needed for any job (e.g. the timber and cement for the various railings and support posts), we pay for the materials. But the labour is free. Unfortunately, they don't do big repairs or general gardening and weeding. But it's a great service, and we couldn't easily have managed without this help, especially in the difficult first months after Allen came home from rehab. A lifetime of our tax dollars coming home – that's how I see it!

The very first area I worked on when I began the Big Spring Clean was the garden alongside the driveway parking area. And I finished that just in time for our own little annual azalea show. In fact, this photo is now more than a month old, so the azaleas are almost ready for their post-flowering trim. But that's not nearly as photogenic a stage as bloom-time. So I'm showing you that slightly older photo here.

Luckily, my garden doesn't usually get as much out of hand as it did this year. But it was a difficult winter for both Allen and me, thanks in part to his fractured shoulder injury. Suddenly Allen again needed assistance with just about every one of the basic tasks he had relearned to do for himself over the previous year (like showering and even cutting up his food). So for four months during his slow recovery from the fracture, we focused mainly on indoor pursuits and twice weekly visits to the rehab hospital. And of course, we also spent a lot of time preparing for Allen's Sydney presentation. But things are getting back to normal now, so I hope that not only will it be easier to keep the garden in shape this summer, there'll also be more time for blogging.

Rose-coloured leaves on lilly pilly trees and azure flowers on jacarandas mean Spring has arrived in Queensland.

24 October 2010

My Life in the Theatre – and Afterwards

What follows is a copy of a 'talk' that my husband, ALLEN HARVEY, gave in Sydney recently, at the National Conference of the Australian Aphasia Association. Allen had written the text over the previous two months, and rehearsed its delivery for weeks prior to the conference, which had the name: 'Beyond Words'.

Primary progressive aphasia, the condition which is slowly eating away at the part of Allen's brain that controls speech, was the subject of one strand of the Sydney conference. Allen's presentation, which was accompanied by a slide show containing 90 photos, formed an interlude between papers presented by speech therapists with a special interest in this form of aphasia. The text of Allen's talk and a selection of photos from the slide show are included in this post.

Allen read his talk from a written text, because even though he can no longer converse fluently in complete sentences, he is able to read just about anything aloud from a written text – word-perfect, in this case. Indeed, one of the conference participants congratulated Allen afterwards, saying: "Your speech was so clear that I understood you better than any other presenter at this conference!" The training of a lifetime still serves, I guess.

Here, then, is Allen's talk...
I was born with holes in my heart.

The doctor told my mother: “He will not live beyond his thirties.”

Look at me now! 81 and still going strong.

I had my first open-heart surgery in 1962. Last year, I had open-heart surgery again. The heart was fixed OK, but I had big problems after the operation.
I have Primary Progressive Aphasia, and my brain didn’t like all the drugs I had during surgery. So! I was in Intensive Care for nine weeks.
The doctor told my wife: “You’ll never take him home.”
Well, here I am again! Just stubborn, I guess.
Aphasia is a sneak. I didn’t feel anything. I never had a stroke, and I didn’t get hit in the head like some others. Actually it made me laugh when I said the wrong word, or when driving my wife asked me to turn right and I turned left. At first, I took no notice. But my wife and kids noticed.
I couldn’t remember names. I would say the wrong word and even stutter a little. This went on for some time. Eventually, we decided to see a doctor. We thought maybe I had a stroke.
 I had a brain scan, and the doctor told us: “No, not a stroke. You have Primary Progressive Aphasia. There’s no known cause. And it will probably get worse.”
Let me tell you about my life, so you will see what aphasia has meant to me.
All my life I’ve worked in the theatre. Here’s how I got started.
When I was twenty a friend asked me, would I be in a musical comedy? “We need men for the chorus”, he said. So I said: “All right”.

I went to a rehearsal and I saw a lot of people of all ages, talking and laughing. Suddenly a voice called: “Attention, please, ladies and gentlemen. I want to do the scene in the ballroom”.
I found out this man is called the producer, and he tells the actors what to do. I decided: that is what I want to do.
In the Sydney paper I found the Independent Theatre in North Sydney. It pre­sented plays and also had a Drama School. So I started doing two classes a week.

Over the next five years, I learned stage management at the Independent by watching the plays, and I learned producing by watching rehearsals.

So that’s how I got started. After that, I worked six years in stage management, production and acting, in Sydney, Brisbane, Melbourne, Adelaide and Perth.

These pictures show a few of the shows I worked on.

I also did tours to country towns...

...and several tours of New Zealand

In 1960, Canberra Repertory asked me to be their Manager and Producer. I said yes. With my wife Meril (Grace) and sons Julian and Andrew, I was in Canberra for four years.

Next, the Elizabethan Theatre Trust and the British Council gave me a scholarship to study acting and production in the UK for one year. And the French and German embassies added some money.

And so I visited drama companies and saw plays, operas and musical comedies in England, Germany, Italy and France – one hundred and twenty-nine different productions. On my way home, I saw twenty more plays in New York and Canada.

Back in Australia, the Theatre Trust made me production director of the Theatre Royal in Hobart. During two years there, I produced about fifteen plays, one opera and two musical comedies.

Next I went as director to the National Theatre of Perth, and after that back to Canberra for a while.

Through someone I met in Canberra, I was invited to Hawaii to open a new theatre for the Bishop Museum. I stayed two years in Hawaii, producing plays, exhibits, dances and songs – all relating to Hawaiian history. I also wrote, produced and acted in a play about Robert Louis Stevenson, who came to Hawaii many times.

Back  in Australia I moved into arts administration, first at the Australia Council and then as Executive Officer of the Tasmanian Arts Advisory Board.

Then I wrote two plays – one for the ABC and one for a theatre-in-education company. I also wrote dozens of radio and TV scripts for ABC education.
And I wrote and produced a series of musical revues.

In Tasmania in the late 70s I also met my current wife. Carol and I have been together for more than 30 years.

  Our family includes my sons Chris and Julian, daughter Zoe and three grandchildren.
Son Julian marries Teri in September 2009
Daughter Zoe marries Brandon in July 2009
Another son, Andrew, died in a motorbike accident. 
Julian & Chris at my 80th birthday
Andrew Harvey 1959-1968

When I finally retired in 1996, I had been a director, stage manager or actor on one hundred and sixty different productions.

For the next 10 years Carol and I lived and travelled in developing countries, where she worked on aid projects.
We lived in the Philippines and Laos, and we stayed in Vietnam and Cambodia. We would visit villages and schools. Carol says I was like Prince Philip. I would walk behind her with my hands behind my back, and chat with everyone. 

Now I have a new job: dealing with aphasia! I’ve had speech therapy several times. I had two semesters at a University clinic for people with aphasia.  
This year, Carol and I took part in an aphasia clinic on the Sunshine Coast for eight weeks. The seven couples from that clinic have now formed the Sunshine Coast Aphasia Group. We meet two times a month for conversation and activities.
At home, I spend my time writing memoires and letters, reading, doing word puzzles and computer programs for aphasia, and singing every day.

Sam helps Granpa Allen with his speech therapy homework

I also try to keep active. I go to rehab twice a week for exercise and therapy.

And I help Carol in the garden.

Well, that’s my life so far. I’ve gone well past thirty. Wouldn’t my mother be surprised!

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.