wings and things

Dementia and deception

For several weeks now, I have been leaving the nursing home at around 5.30pm after helping Ants with his dinner. I turn the television to the ABC news, draw the curtains, make sure the air conditioner is on to the heat setting, rearrange the blankets on his legs, and give him a hug and a kiss and say,

“I just have to do some grocery shopping, but I’ll be back later, Ants, okay? Do you want me to get some chocolate? Yes? See you soon then. I love you.”

And then I go home with my heart thudding LIAR!

So why am I lying? Because, now that Anthony is in the throes of PDD (Parkinson’s disease dementia), the lie that I am coming back soon, when I am actually going home, is much kinder than wrestling verbally, and emotionally, with him about why I can no longer bring him home.

If I say, “I’ll be back soon”, I don’t have to say, “You are too heavy for me to manage at home.” And I don’t have to see his eyes go sad. Instead, he smiles and hugs me and says “Don’t be long, Jules”.

Tonight I told the evening nurse-in-charge about my new method of leaving Ants and she gave me the thumbs up and said, “Sometimes, in cases of dementia, a white lie is kinder.”

“Yes, but when I say to him that I’ll be back and I don’t actually come back, does he get distressed and ask for me?”

“No”, she said, “we just put him to bed and he is fine.”


The end of winter

Here in Australia we are two days away from spring after a very wet winter. Monday is the first day of spring and I am going to celebrate but I’m not sure how yet. Perhaps I will buy another camellia tree like this one from which I take flowers in to Anthony every second day.

photo (3)

The other day I gave one each to the two women I play cards with during my volunteering hours. Gift-giving rules are very strict at the nursing home but I figure flowers can’t do anyone any harm, although Nat would prefer the chilli-garlic olives I used to bring in until reprimanded (risk of choking etc.)

Ming and Fran 2
Ming and Fran

And here is Ming with his little second-hand car, ‘Fran’. He has named her ‘Fran’ after the character in the comedy series Black Books, one of our favourites. As it happens, I am about to take this series into the nursing home to play on Anthony’s new DVD player. I took The IT Crowd in a couple of weeks ago and, even though Anthony slept through some of the two episodes I played, he woke up with a bit of a smile every time I guffawed, which was often.

The strange phenomenon in which Anthony sometimes thinks that what is happening on the television screen is happening in his room comes and goes. I only discovered this by accident one evening months ago when I rang him and he asked me to pick him up from Burekup (a nearby town) from an Aboriginal ceremony. At first I thought this was him hallucinating (a Parkinson’s disease symptom) but then I heard the background noise of his television which turned out to be a documentary about an Aboriginal ceremony; I could even hear the chanting! Now that we are watching Midsomer Murders every weekday afternoon from 3.30 – 5pm (another one of Anthony’s favourites, mainly because of the English countryside, the classic cars and the big old houses – not the murders), I sometimes worry that he will get scared. But seeing as this is probably the most benign ever of murder shows, it never happens and anyway he can no longer follow plots. I have gotten into the habit of checking the television guide before I leave every night and leaving the television on a channel that isn’t going to be showing a horror movie, or something like that. Ironically, this is usually the ABC news station.

Well, I better get going!


And on a lighter note!

Last week Ming got his driver’s licence back. He had to do a written and a practical driving test and the very next day we went up to Perth to collect the little second-hand Toyota Yaris (he has christened it “Fran”) that he had arranged to buy with his savings. Obviously our insurance claim on his ute/truck didn’t pay, but even if it had, Ming never wants another ute again so someone bought it for parts and towed it away earlier in the month. The sight of it out in the back yard, for all of these past months, is not something I will miss although it still has a kind of ghostly presence there, slowly fading.

Ming felt there was one last thing he had to do (to move on, I guess) and that was to go back to the site of the accident and remove his P-plate from the tree he’d crashed into. After the accident it had been stuck up high on the tree and we were never sure if the police or insurance people did this to mark the spot for further investigation, or if it was just someone being nasty. In any case, yesterday, Ming took our old ute and a ladder up there and removed the P-plate. He also found bits of debris from the crash so he removed those too and brought them home to be taken to the dump.

Having regained his independence, the angry Ming of the last few months seems to have disappeared and the angelic Ming has returned – haha! In a way I guess we have now come full circle in the sense that he was a newly licenced driver when the accident occurred and now he is again a newly licenced driver but with an older head on his shoulders. So that is that. Or is it?

Naively, I had thought that once Ming got a car and his independence back, there would somehow be a feeling of closure (for me, I mean), but I relapsed last week into some of the feelings described in the last two posts. The closest I can get to describing this is to liken it to waking up just before a nightmare has come to its conclusion, so you never get to “The End”, and you don’t get that phew of relief that it was only a nightmare. Perhaps the notion of closure is a myth we have invented in order to make things neat and tidy again after a traumatic experience. Perhaps it is living with and beyond the absence of closure that makes people stronger, wiser, even kinder. I don’t know.

What I do know, however, is that I have never seen anything as funny as big, tall Ming folding himself into little, tiny “Fran”!


Beware of the dog: a cautionary tale

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How stupid was that!

The dog was here, again, its initial growl sounding like a lullaby until, once I had written my words down, it began to bark madly as if I had done/said something wrong. So I edited what I had written until the dog swallowed my extra words, until it attacked my thumping heart and painted it red with slices of stillness, until it put its big paw against my throat and whined until I woke up.

Jet black, this dog blends into the evening sky invisibly, sleeps in the pocket of the dark blankets around my feet at night, wakes me up every morning with the audacity of its sudden absence – not my best friend, not my worst enemy, but my closest companion.

Of course I hate the presence of this black dog, and its black eyes, and its black waving tail, and the black fur of its snuggly black snout but recently I have noticed the growing yawn of its absence. Hurray!

That dog was blocking out the sun with its big, dark presence, its ridiculous attempt to be a metaphor, its wolfish editorial antics. Beware of the dog.

I wrote about the accident yesterday, naively thinking that if I regurgitated the stones in my throat, it might be possible to reach a place of calm, cathartic peace. How wonderful was that!



It seems a bit obvious to say that once a disease, or a disorder, has been named, even acronymmed, it exists as a real, recognized condition. For me, this has become an inviolable truth.

PTSD stands for post-traumatic stress disorder and it affects, in horrible ways, those who have been victims of wars, violent crimes, child abuse, terminal illness, and accidents (to name just a few).

When people come out of an experience where they could have died, but didn’t; where they could have been permanently injured, but recovered, there is an unspoken expectation that rejoicing is the correct response.

But is doesn’t happen like that. I wish it did, but it doesn’t.

When my son’s car accident injured four of his cousins and a friend last October, it altered the microcosm of our family world in ways that have been profoundly good, profoundly bad and sometimes a strange mix.

Naively, I thought/hoped that once the children had recovered from their injuries, once the court case was over, once we all forgave each other for allowing that joyride, everything would go back to normal.

But it wasn’t that simple. One mother was in another country that night and had to hear the news on the phone; I was busy in the kitchen and didn’t know my son had taken the kids for a ride; everyone else was outside on the front veranda, drinking, eating, talking and having fun. At some stage, the joyride was casually approved, ignored, disapproved, cajoled, forbidden, unnoticed ….

….until the phone-call: “Mum, I’ve had an accident – everyone is alive.”

I thought he was kidding; I thought he was in his shed with the kids; I even laughed at what I thought was a joke – until I realized. And that was when the rest of us got into our cars and raced off before we even knew where the accident had happened. On the phone, my son had told me the road (just around the corner), but my mind went to mush and I ended up on a nearby gravel road and rang a friend, sobbing, terrified, and she went straight to the accident scene to join my brothers and I went home to tell my mother and sister-in-law.

I found the two women frantic so we then went straight into town to the hospital, all of us crying. When we got there and found all of the children injured but alive, the relief was something I will never forget. I then had to go to the police station and wait (with my beautiful friends) for hours until my son was released from questioning. He was as white as a sheet and shaking and his remorse (he had lost control on gravel) was overwhelming. I then took him to the hospital to see the children after reassuring him that they would all eventually be okay.

And now? Yes, all of the children have recovered after having to be in various spinal braces, leg splints etc. One niece had to be in a brace for months! All of them are fine now, physically, and don’t mind talking about that night but….

We adults are more aged and less resilient and each of us deals with the pstd aftermath differently, and sometimes in ways that are incompatible with each other. The remembered shock and horror of that night will always be part of who I am, and my absolute fear for, and love of, each and every member of my family that night is fierce.

The aftermath has been, and continues to be, a challenge for many of us but, with all my heart, I hope the pstd can abate soon for those of us still having nightmares, crying in our sleep, and waking up with the thud of fear.

I sometimes recreate my mother, my brothers and their families, and my son, into a huge lego castle of compassion and forgiveness and glee in the hope that pstd will dissipate in the sharing of words, company, or alone-seeking mountains. We have all dealt with this near-tragedy in different ways because each of us is an individual and, ultimately, alone. Alone is important and necessary I guess and I love it, but, since the accident, I have discovered loneliness in all of its intensity because I have recognised it in someone else.

When someone wants to be left alone, LEAVE THEM ALONE! Love doesn’t need proximity and sometimes its distance is a gift. It is very difficult sometimes to cope with the love and attention of well-meaning friends and family when you just want to be in your own space and deal with your own stuff without the burden of other people’s compassion.

This is to you, to me, to all of us.





Wheelchair walking

Apparently, despite the fact that we are in Winter here down under in the southwest of Western Australia, the weekend will be sunny.

So I have decided to do something new and different and take Ants for a wheelchair walk tomorrow. Not only is this a way of getting him into the sun, it’s a way of me getting some exercise!

Also, I am contemplating using my blog to write more regularly again about how a marriage survives the dementia that comes with advanced Parkinson’s disease. Instead of blathering on about this and that, I will focus my blog-writing into a bit of a PDD theme. 

Since volunteering at the nursing home, I have learned so much and I seem to be in a perpetual state of quiet joy, playing dominoes and cards with various residents, doing the daily walk with dementia residents, rushing in and out of Anthony’s room for quick hugs.

The wheelchair walking will be a test of my physical strength (I am very unfit, physically) and, as the nursing home is close to the beach, and hilly, it will also be a test of preventing Anthony from toppling out of the wheelchair when we are going downhill!


From listless to listful

Over the last few weeks I have discovered something wonderful about lists. You know, the kinds of lists that read like this:

– pay bills
– ride bike
– groceries (don’t forget toilet paper!)
– change bedsheets and do the washing
– vacuum house
– write 1,000 words of new book
– ring plumber
– buy new hoses to replace leaky ones
– see Anthony
– cook a healthy meal
– catch up with other people’s blogs
– wash car
– plan next week with Ming
– ring Mother to arrange lunch
– start new filing system
– get prescriptions from chemist
– book lawnmowing people
– do tax
– return library books
– start taking photos again
– start praying again
– make soup
– make a cake for Anthony and Ming
– go to bed earlier and get up earlier
– do a cull of clothes
– sort out rubbish to take to the dump
– do tomorrow’s list

Okay so, despite the fact that none of the above tasks is, in itself, onerous, it was this kind of list, that rendered me listless. (Interestingly, the word ‘list’ derives from the Middle English word, ‘pleasure’). I would only ever be able to accomplish a few of my listed tasks, I would then feel like a failure….

Eventually, I realized that this kind of list-making was making me extremely unhappy, so much so that I could hardly face each and every day. I resented each and every task I didn’t get done and each and every goal that went by the wayside.

Nevertheless, every night I would make another list for the following day. Energized by a pre-midnight spark of incentive, I would make more do-able lists. But with no job to go to, with no Anthony at home to care for, and with Ming out of school, there was rarely anything on my lists that couldn’t wait, so it felt as if I were continually failing myself.

As a result, the familiar depression curled itself into a small bundle of rock-hard heartburn that only left me alone when I was asleep. So I slept away many days in June until, on the 29th, I woke up with a new idea; I would write my daily lists differently; I would write them backwards instead of forwards; I would write what I had done every day instead of what I should do.

– paid all of the bills
– communed with dogs
– did all folding and put a load of washing on
– cleaned kitchen meticulously
– made a cake!
– saw Anthony from 1 – 4.30
– bought a bunch of coriander for the first time in my life
– made a curry from scratch
– washed hair
– communed with birds
– watched a show with Ming
– began reading a library book

To have done even some of the things I had listed as to-do for weeks (but not done), catapulted me out of my fug and into a fantastically different way of seeing each day. Now, with my listful notebook always handy, I list every single little thing I do on every single day – everything from washing my hair to planting strawberries; everything from poaching eggs to making friends with a new resident at the nursing home; everything from catching up with long-lost relatives to picking camellias for Anthony’s room.

This new listful method has also evolved into a better daily routine whereby I am in the nursing home every afternoon, seeing Anthony, doing the volunteering, seeing Anthony again and usually getting home by 6pm.

It is so wonderful to NOT be listless!


Volunteering 2

Ev, the Events Coordinator at Anthony’s nursing home, doesn’t work on the weekends usually, so I asked her if I could do some of my volunteer work in the Dementia wing and she said yes! She told me that they have activities between 3 and 6pm and I could join in any time, so today I had my first taste of what this would be like. I knocked on the main door (it’s a locked section) and I got a nice surprise when the staff member who opened the door was Jill, who I already know because she brings three women residents for a walk around the nursing home every day at about 3pm and they pass by Anthony’s room where we all exchange waves and hellos. Once I explained I was now a volunteer, she was delighted and asked me to come for the walk. I was thrilled.

Jill always holds 91-year-old Wilma’s hand as they walk; Beryl (80s) usually walks by herself; and Meg (80s) holds her daughter, Cheryl’s hand. All three women residents are extremely mobile, cheerful and vocal (including singing as they walk) and all three also have dementia. Towards the end of the walk, Beryl put her left hand lightly around my right elbow and I felt a pang of joy as she asked me again what my name was. Back in the dementia wing, we all sat outside in a lovely patio and Jill organised some memory games. At 4pm, my hour was up so I excused myself and thanked the staff and residents for having me. Beryl squeezed my hand and said goodbye.

On the way back to Anthony’s section of the nursing home, I felt a sense of happy nostalgia for the years I worked in nursing homes, the years I wrote about dementia in my PhD and a subsequent book. I also felt a bit of melancholy nostalgia for the years of writing during which Anthony would help me fine-tune my argument which was about the importance of listening to, and conversing with, people with dementia, regardless of how the conversation might meander between memory, fantasy, lucidity, sense and nonsense.

It was amazing today to see staff and residents so compatible and cheerful but what really got to me was the mutual respect shown. I worked in several nursing homes in the late 1980s to 1990s and I never once saw what I saw today: staff and residents having fun together in a prolonged way!

Rushing into Anthony’s room so I could tell him all about it, I found him still asleep in his chair the way I’d left him an hour previous. I sat down in the chair I always position next to his and put a favourite DVD of ours into the player I only bought a few days ago The IT Crowd. Ants kept sleeping while I watched a few episodes but, every time I guffawed, he would open his eyes and smile, then tell me to turn the hoses off.

[To blog-friends, I’ve decided to post on weekends and do comments and read blogs during week now. I feel a bit out of touch!]


Volunteering 1

It has taken several weeks to sort out the red tape of me volunteering at Anthony’s nursing home. Okay, let me explain: I will now get paid a small allowance if I do 15 hours of volunteer work per week at a not-for-profit organization.

As it happens, Anthony’s nursing home is not-for-profit so last week the Events Coordinator, Ev, showed me the ropes and suggested things like playing cards with Nat, an 83-year-old woman with Parkinson’s Disease and numerous other afflictions, who is in a wheelchair. Then Ev said, “You can always bring Anthony to sit and watch.” My heart did a somersault.

Well, since I already know Nat, it wasn’t exactly difficult to break the ice on Monday, but I was still nervous. I got to the nursing home before noon and helped Ants with his lunch and explained the volunteer thing then I left my bag and scarf in his room, so he would know I was coming back. Then I went to find Ev who wheeled Nat up to the dining room so we could sit at a table for the most complicated card game I have ever played! [more about that tomorrow]

Nat: At a loose end are you, love?
Me: No! I’ve become a volunteer here and you are my first victim, Nat.

Nat cracked up laughing. She is quite famous for her huge, loud, beautiful laugh. Then she said, “Go and get Anthony.”

So I did.