I have decided to take a prolonged break from blogging until after Christmas. In the meantime I wish everyone the very best for 2015!
Saying ‘yes’ to surreality
Ever since I was fooled by the plum tree into thinking its blossoms belonged to the avocado tree I am much more aware of how trees that are next to each other seem to have a habit of hugging each other. Here are the photos I took of ‘the avocado blossoms’ several weeks ago. The first one shows why I was confused but the second one shows quite clearly (except to an idiot – me!) that these are two separate trees.
Anyway, the following photo shows just how tricky these trees can be; here we have a camellia tree masquerading as a fig tree (or is it the other way around?) I showed it to one of the residents in the dementia wing the other day and she said, “What a strange tree!”
Up close, of course, it is quite obvious that the fig tree is a fig tree and that the camellia tree doesn’t have a sense of personal space.
Last summer I stopped watering the plants in order to save electricity on the pump; hence most of the ancient rose trees have died (despite a gardeningy person telling me it was impossible to kill roses) but everything else (palms, multiple camellias, un-fruiting orange and plum trees, silver birches, the two fig trees, the two avocado trees, the two pear trees, the lemon tree, the poplars up the driveway, the flame trees, and many other wild bushy looking shrubby things, have survived. This is probably because Anthony planted many of these at around the time I was born – over 50 years ago – so their roots are deep (you see, I have now done a bit of gardening-for-dummies research).
I guess what’s surreal is that, when I took ‘the avocado blossoms’ into the nursing home and put them in a vase, Anthony didn’t correct me and say, “Those aren’t avocado blossoms, silly!” (Actually nobody corrected me until I wrote a post correcting myself and then a friend said to me, “Yeah, I thought you’d definitely lost the plot!”)
Every single person with every single kind of dementia has, I think, has an ability to accept the surreal as real. Yesterday, during a children’s concert at the nursing home, one of the residents kept asking if the woman on my right (another resident) and the man on my left in the wheelchair (Anthony) were my parents, so I explained that one was my new friend and the other was my husband. She looked at me with interest and said, with absolute certainty, “My parents will be here soon”, and I said, “Yes.” By end of the concert she had forgotten about her parents and was fine, delighted as we all were, by the children’s voices.
I’m not sure here, but it seems to me that if someone’s reality is fractured by dementia, and their reality becomes a dreamscape of surreal thoughts, memories and emotions, maybe the best way to respond is in the affirmative, and to say ‘Yes!’
And that is why I still have an avocado tree with pink blossoms!
“Can I get you anything from the shop, Ants?”
This has pretty much become my exit strategy lately when leaving Ants and coming home from the nursing home. I say I am just going up to the shop to get some eggs (just as if we are home), then I ask if he wants anything, like chocolate or cake or cheese or bananas and sometimes he says yes to one or more of these items. “Don’t be too long,” he sometimes says and I promise that I will be as quick as I can. If I have been at the nursing home since 11am or earlier, I leave at around 3.30-4pmish; if I have only arrived to help him with his lunch, I will often stay until 5.30pm so I can help him with his dinner (his ability to feed himself fluxuates a lot) Occasionally, like yesterday, I take the day off and Ming visits for me, or my indispensable mother does.
My exit strategy is a ruse of course, a way of leaving Anthony that deceives him into thinking that I am coming back soon but, after weeks of using this, at first tentatively, but now confidently, I am convinced that this is much better than saying, “I’m going home now, Ants – I’ll see you tomorrow.” If I say that, I have to explain at length that he is in a nursing home and this is the kind of conversation that happens, when he is able to talk:
ANTHONY: Why can’t I come too?
ME: Because of your Parkinson’s disease, remember?
ANTHONY: But I’m getting better!
ME: I know, but you are still too heavy for me to bring home.
ANTHONY: Well can you tell those kids [the staff] to keep an eye out for me?
ME: Of course!
Sometimes this kind of conversation goes on and on and on and might be prolonged by Anthony’s hallucinations that there are dogs, cattle or even snakes in his room, all of which I have to dispel before I can leave; sometimes he is unable to speak at all and will simply grab my hand and snuggle it up to his face; sometimes he will be asleep when I leave so I tell the staff.
This afternoon, this was our conversation:
ME: I’m just going down to the shop, Ants. Do you want anything?
ANTHONY: Love – a lot of it.
ME: I’ll give you a bit now [hug] but I’ll get 100 kilos of it and bring it back soon, okay?
ANTHONY: Okay.
And he smiled his beautiful new slow smile and let me go….
Before and after!
Ming has spent several months travelling to and from Perth to audition for a variety of acting roles, and to undertake training in this field. For much of this time, he didn’t have a car or car licence so took the train or bus and either stayed with kind relatives and friends or at youth hostels. Now that he has his licence back and his cute little car, going to Perth and back has been easier and he has been relishing his independence.
But now that he has this full-time job at the restaurant (which he loves!) he has decided to put the whole acting thing on the back-burner so he has now had his acting hair cut off
Before (this photo was taken at Meg’s 80th a couple of weeks ago):
After (this photo was taken tonight):
Un-planning Christmas
Somebody said to me the other day, “Surely, you’ll bring Anthony home for Christmas,” and I felt sad as I tried to explain how this might not be possible.
I have spent a lot of hours on the weekend and tonight looking back on my blog posts to try and find the last date that I brought Anthony home and I think it was March 16, this year, which makes it almost exactly eight months.
So, on Christmas Day, Ming and I will open our presents to each other in the early morning, and then we will meet my mother at noon so that we can have Christmas lunch with Anthony at the nursing home. Or maybe not!
Un-planning!
Subtle changes
The fact that my daily routine now includes spending much of the day with Anthony in the nursing home means that I don’t see his deterioration except in tiny increments, day by day.
Yesterday one of our friends visited Ants and she was just leaving as I was arriving. She is the mother of one of my best friends, nearly Anthony’s age, and has her own health problems and yet still visits Anthony regularly – an unbelievably kind and generous person but today a bit uncertain.
“I don’t think he knew who I was, Julie,” she said.
“Maybe I talk too much and it upsets him,” she said.
“Can you let me know if my visits are helpful or not?” she asked.
She was quite distressed at Anthony’s unresponsiveness and wondered how I coped with going in every day. Didn’t it get me down? I told her that I hardly ever got down any more and actually looked forward to going into the nursing home. She looked as surprised as I feel about this miracle. I am surprised that my relatively newfound eagerness to get into town to see Anthony every day has been so sustainable because I was a bit nervous that it might kind of wear off!
Now I know for sure that it will never wear off probably because I’ve accepted the status quo and am prepared for what lies ahead. Our friend’s distress at seeing Ants so deteriorated yesterday, sort of chair-ridden and blank, unable to respond verbally and very sleepy, was only because she hadn’t seen him for a week or so. I guess it’s a bit like noticing how much a small child has grown if you haven’t seen that child for awhile; it’s a bit of a shock.
After our friend left, I went into Anthony’s room and said, “Didn’t you recognize M?” but he said yes he had. I could see, though, that what might have disturbed M was the increasingly blank expression on Anthony’s face which is partly due to his facial muscles not working because of the Parkinson’s disease, including not blinking (which makes him look both sad and angry), and partly due to the confusion of dementia.
Of course Anthony is only going to get worse, more confused, eventually bedridden and totally unresponsive, so I am developing a more tactile and rather boisterous relationship with him instead of pushing the conversation thing. After all, his voice is now so soft and his words often unformed, so we need to establish a way to communicate that transcends the verbal – almost like a code. This has included hand-holding, neck massaging, sitting on the arm of his chair with my hand on his head, and/or loudly beckoning him out of his slumber with a funny anecdote from the past, clowning around and bopping to music, asking him for advice with a nod or shake of his head, watching dvds of television series he used to love, laughing and being cheeky (I have a rather raucous laugh which I make the most of in order to see his slow smile), and lots and lots of hugging.
The following photo is my usual profile picture and it’s a bit of a shock to realize this was five years ago!
Then I just discovered this one, obviously taken seconds after the first photo. I can’t wait to show it to Anthony later today! I hope it will make him smile my smile.
Dusk
It is difficult to take photographs at dusk, especially if you have an inferior camera and/or an amateur photographer, and/or if that same amateur photographer is a bit rusty. Nevertheless, and despite the poor quality of the shots, this particular amateur photographer thoroughly enjoyed getting herself back out there last night.
For some reason, many of the peafowl like to congregate on the roof of the wash-house at dusk, sometimes just to look up, which they are very good at.
On the other hand, this same roof has also become the stage for some ferocious scuffles between the King peacocks. This photo was taken during a short truce because I didn’t click the camera in time to capture the battle. It’s okay, they didn’t hurt each other; one just flew away. In the background you can see the top of a palm tree pretending to be a peacock.
And here is Gutsy9 in meditative mode.
I handed in my application today for the ‘lifestyle assistant’ job at the nursing home and am excited at the possibility but trying not to get my hopes up. It’s part-time which is perfect for me and the usual shift seems to be from 3-6pm which is also perfect. I told Anthony but lately he has been so sleepy and confused that he didn’t really understand until I said, “Well, the money might be good” at which his eyes lit up – ha! Money is something he is constantly worried about, having been a hard-working, frugal farmer for all of those decades. And, yes, it would be good to be earning a wage again and doing something I have always wanted to do – interact, relax with, comfort, and share a joke with people who have dementia. All those years ago, when I was a nurse, there was never any allotted time for this and the notion of lifestyle assistance was unheard of. How wonderful that this nursing home employs people in this way.
If I get the job I won’t be home until after dusk some days. This is probably a good thing as I think I am better at morning photos!
Catching up
After weeks of fighting a tenacious flu that kept coming back after each course of antibiotics, I finally got a chest x-ray which was clear (phew!) but my dr seems to think it was probably a case of pneumonia treated with the wrong antibiotics (I saw another dr to begin with because mine wasn’t on duty). So now I am on a fifth course of two different antibiotics and already feeling a lot better instead of a little bit better. It is such a relief because, despite being well enough for my mama’s 80th b’day and well enough to visit Ants most days and to do some volunteer work, it is only now that I am beginning to feel normal well ha!
As my role as ‘care-giver’ has become most of my identity now, I have a bit of a terror problem when I get sick because I am so needed by Anthony so to have been given the gift of a clear chest x-ray is like gold!
I’ve been trying to catch up and re-connect with blogger friends but have now decided to simply read blogs in a from-now-on mode rather than go back to see what I might’ve missed. It’s been a bit of a relief, too, to let go of the self-imposed feeling of obligation to blog every day if I just don’t have the time or inclination. Perhaps someone should write a book about blog psychology because I get the impression that other bloggers often suffer the same kind of ridiculous guilt. Interesting.
My volunteering at the nursing home, though interrupted by this flu, because you are not supposed to go in there if you are sick (paradoxically, this is probably where I first got infected), continues to delight me and I have now sent an ‘expression of interest’ email in response to last week’s advertisement for a “lifestyle assistant” in the dementia wing. This is a permanent part-time position from 3-6pm for someone to provide activities while the nursing staff conduct the evening showers. As I have already been volunteering in this wing from 3-4pm on the weekends, I am familiar with each of the ten residents and have developed a bit of a rapport. Tomorrow I will fill out the application form and hope for the best. I think this kind of arrangement would be a perfect match and hopefully there will be no perceived conflict of interest as Anthony is not in the dementia wing. I am quite excited about this job possibility and the money would be a relief!
Ming has a job he loves at a restaurant called ‘Corners on King’ so he is gradually becoming independent financially and in other ways. He hates for me to make him any food so my tactic has been to make him a smoothie every morning into which I pack a punch of secret ingredients (if you want to know the secret ingredients you will have to email me!) For those who don’t know, Ming has, from birth, had a rather extraordinary unhungryness – long story which I can’t be bothered telling now but my best illustration of this is the 40C degree day, when he was about one, in which Ants and I had to use a syringe to push a bit of milk into his ungreedy little mouth.
The last few years have been enormously challenging with me having to resign from my job as university lecturer; Anthony’s permanent admission to the nursing home; my mother’s horrifying injuries after falling from her bicycle; the car accident and court case and cousins’ heroic recoveries; Ming’s two scoliosis operations; some friendships rekindled and others on hold; peace, joy, guilt and wretchedness in equal amounts; Ming’s short-lived, but loved, dairy worker job abandoned due to his spine; finding out that you really love eggs on toast; and that if you don’t like what you look like, you need to stop looking at yourself and look away…..
…. and finding out that the width of hope is immeasurable!
Catchya later….
jmgoyder 