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.


Anonymous said...

Wonderful post - what a struggle and it shouldn't be like that. People should never underestimate the importance of advocating on behalf of loved ones to medical professionals etc., This is a bit what it is like with autism - I am constantly educating people who should know about this stuff (including paediatricians) - Michael's paediatrician said that being diagnosed at age 3 seemed a bit too young to him (even though in America they are diagnosing autistic children at 1.5 years old and age 3 is almost too old for effective early intervention).

Stafford Ray said...

Thinking of you both and hope 2011 brings improvements for Allen and some laughs for you both. I will try to bring you some! :-)

Chartreuse said...

Thank you both, dear readers, for your kind comments. I've been rather remiss in posting recently, as you may have noticed. Some changes in A's sleeping pattern have taken up a lot of my energy but we are slowly settling to a new routine. Hope to get back on deck soon, but for now there's masses of storm clean-up to do. We are high up in the hills so no danger of flooding, but endless rain and wind have left my place looking like a cyclone's been through. Keep up your own good work and best wishes to all for the New Year.

Hahnsmum said...

Bestest Wishes..l too am a fulltime carer of my disabled son & my old man..But l didnt come in here to winge, or talk re my life..l understand yr plight ..So best wishes.. My animals , my puter, my crochet & my great friends keep me grounded..Bet you feel the same..l was so pleased to see you have a common interest with me.( Your cute little dog)_..l LOVE dogs.. God speed Lady.. Regards, Pam Clarke.
New England, NSW, OZ..

Chartreuse said...

Lovely to see a new reader here, Hahnsmum. Thank you for your kind comments. I need some inspiration to get back to blogging, which I've ignored for a few months for various reasons. You've reminded me how much I miss interacting with like-minded readers. So watch for new posts soon. Meanwhile, best of luck to you in what I'm sure is your own very demanding role.

Anonymous said...

I found your blog through Down to Earth. I applaud you for caring for your husband during this very challenging disease. Here in the U.S., too many families just send their family members to the nursing home and rarely visit them. You are a great couple and have so many great memories to cherish. Remember to take a bit of time for your self everyday, so you can maintain your strength.
Hope to keep reading your blog.
Sienna from the USA

Chartreuse said...

Welcome to my new friend from Sienna. (What state is that in? Sounds like CA.) So good to see a new face (well, maybe not 'see', but never mind!)

I agree with you about nursing homes. But in Australia as in the USA, when it comes to caring for a parent many families really have no choice. Most couples nowadays need two incomes, and elderly parents often need full-time care. But most Australians try to keep their partners at home. We are lucky to have many services available to help us. Just yesterday, for example, I had a (free) visit from a tradesman to check and fix two small leaks in my roof - part of a a State Government program that helps people who have disabilities continue to live in their own homes.

I always remember the years I lived in Asia, working on aid projects. Whenever I was invited to a colleague's home there, it was not unusual to see an elderly parent or even a grandparent sitting quietly in the corner, maybe helping with small children and then rolling out a mat at night to sleep in the living area. No one felt it necessary to explain who the old person was, or worried if at times the parent acted or looked a bit strange. And sometimes Asian friends would ask me: "Is it true that in your country old people go to live in an institution?" The concept was almost unbelievable to them. Maybe I absorbed some of that attitude. But I'm lucky: my husband is able to shower and shave himself. And when he did need a lot of help, he weighed less than me and I could manage easily. Most importantly, though, he's always reasonable, cooperative and never stubborn. In caring and being cared for - as in so much else in life - attitude seems to make all the difference.

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.