jmgoyder

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.”

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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”!

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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!

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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:

Monday:
– 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.

Monday:
– 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!

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My second home

Anthony

In my last post, I wrote a bit about how, instead of taking Anthony out for drives or bringing him home for the day, I have begun to make myself home in his room in the nursing home. For those who don’t know, Ants has advanced Parkinson’s disease with encroaching dementia, advanced prostate cancer and several other conditions. He is 78 and has been in the nursing home for nearly two and a half years. I have already blogged about the heartbreak of that mutual decision, and written about the ongoing ups and downs since then.

Several weeks ago, I realized that I had to stop getting Anthony up and out, and back home, and visiting friends and relatives, and going to restaurants etc. because I could no longer lift him in and out of the car, wheelchair etc. Well I could actually, but the physical strain and emotional stress of all of this maneuvering was taxing for both of us, and Ming too of course.

You see, all of the above jobs were infused with a panicky anxiety. Will the pills work today? What if I can’t get Ants to the toilet in time? Will he try to walk around the farm/restaurant and fall again? What if I have to get the ambulance out to the farm? Will he be too cold and insist that every heater is on? Will Ming cope? Will I cope? Will Anthony cope with going back to the nursing home after being out and about? Will there be more tears than we have already cried?

So, almost as an experiment I guess, I began to spend more time in the nursing home, something I couldn’t have done even a year ago – too boring, too sad, too scary, too confined, too uncertain – I hated it. But gradually, over many weeks now, this has become the norm and the fact that I am spending several hours a day with Ants in the nursing home means that he is no longer so desperate to come home and often, by late afternoon, he thinks he is home.

I keep long-lasting stuff, wine and snacks in one of Anthony’s cupboards, bring a favourite food every day (blue cheese, chocolate, olives etc.) and sometimes it’s a little bit like a party. If the heater isn’t on, I turn it on, put a blanket on Anthony’s legs and do up his jacket up (he is always cold). Then I turn the television on to whatever our program is for the day (Master Chef, Midsomer Murders, Neighours). During the commercial breaks, I mute the TV so we can talk but lately Ants is having a bit of trouble with speech so I have to help a bit. Yesterday he couldn’t get the sentence he wanted to say out so I told him I could read his mind and not to worry. And I can read his mind.

But then his words came out:

ANTS: You make me nervous, Jules.
ME: Why?
ANTS: I’ve fallen in love with you again.
ME: Hell, Ants, we’ve already done that!

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‘At home’

It is several weeks now since I began the routine of making myself at home in Anthony’s room at the nursing home. Sometimes I am there from noon to 5pm, but mostly from 2-5pm. The fact that I am always there at sundown has been a plus, and sometimes Ants thinks he is at home. My mother visits him at least once a week and told me that I had made a little ‘Bythorne’ there (that’s the name of our farm). I now write everything Anthony says to me in a notebook because I am fascinated at how someone with encroaching dementia can to-and-fro from past to present, from memory to imagination, from anxiety to exhilaration. But his grief when I leave to go home can be very upsetting because I have to explain that I am going back to Bythorne and he has to stay in the nursing home. Anthony doesn’t always understand this and thinks I am abandoning him so it is always a difficult ‘goodbye’ but I think I have figured out how to make it easier with a bit of banter – not sure yet.

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Routine to the rescue!

I have never been that crazy about routine. As a younger person I had a reputation for being a bit erratic, despite being a nurse and then a lecturer (jobs in which I was never late but always nearly late!) When Anthony went into the nursing home (nearly two and a half years ago), there was a lot of grief, confusion and uncertainty, but no routine.

Now we have a routine and my heart has stopped racing around anxiously. It is so simple and easy and I wonder why I didn’t do this before but I guess the new routine coincides with a noticeable deterioration in Anthony’s mobility and mind function.

For a couple of weeks now, I have been going into the nursing home for most of the afternoon. In Anthony’s bedside cupboard I have lots of snack foods and drinks, cup-a-soups, brandy, wine, chocolates and sometimes I bring fresh cheese and olives.

If the heater isn’t turned on I reach up and press the button, after kissing my husband hello. Then I put a blanket from home on Anthony’s legs, adjust the chair, change the TV station to something I want to watch, move my chair right next to his and hold his hand.

Sometimes (lately) Anthony says, “How do you always know where to find me?” Sometimes he can’t get the words out – they stumble and crouch, frustrated, just above his lips. Sometimes he drools into what we call ‘the dribble rag’ because his swallowing reflexes have slowed down. Sometimes he tries to squeeze my hand in his and there is a small smile.

So I am now in the nursing home with Ants from 2-5pm most days and sometimes from noon. Does this make me a caring-wife hero-type? No! I don’t even understand what has happened to me to make me all-of-a-sudden so attentive! I love him, of course but I hated going into the nursing home for awhile/off and on. Now I actually can’t wait for 2pm every single day.

This routine has really helped me cope.

PS. This new routine means I don’t have much time atm to follow, comment on other blogs but you are all on my radar.

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Monday 9th June 2014

Today I went into town just after lunch to spend the afternoon with Anthony at the nursing home. This has become the ‘norm’ now because a few weeks ago it just became too difficult to take him out and about or to the farm on a regular basis because of mobility problems. Over the last several days Ants has been quite content to just have me in a chair next to him with my arm around him, watching Judge Judy, Dr Phil and, if we are lucky, a good afternoon movie.

I usually stay from around 1.30 – 4.30pm (my new routine) and it beats the hell out of my old routine of taking Anthony on outings, or home, then being unable to manage. Even at the nursing home, I have been told not to lift, move, or even shift him in his chair, because he is now strictly classified as a 2-person lift.

This afternoon I entered Anthony’s room with wine and olives and my usual ‘goodies’ and he was asleep in his armchair. Usually I wake him up, but he looked too peaceful so I just sat next to him and quietly ate all of the olives. Suddenly a nurse entered the room to take his blood pressure because he had been asleep all day. He woke up but only slightly and the nurse and I struggled to get one of his arms free from his jumper because he was so limp and ‘out-of-it’. Well his BP was 190/110 – very high. This, and the fact that I couldn’t really wake him up enough to say goodbye when I left to go home, alarmed me a bit.

On the way back home to the farm, I allowed myself to think that Anthony might be dying. But my thinking of this possibility could not translate into a coherent thought because I cannot imagine him not being here. Despite the difficulties of home nursing, the transition to a nursing home, and all of the mini-traumas in between, I have not yet been able to imagine life without Anthony in it.

My father, Brin, died of a heart attack on this day, 36 years ago. He was only in his 50s.

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Resting

I’ve had a wonderful rest from blogging (as in NOT reading, writing, commenting, replying) and, despite the inevitable guilt, it has been great to concentrate on other things.

Like my navel!

IMG_0069

That’s Gutsy9 by the way.

Life here has become too busy to sustain blogging every day so I’ve decided to post once a week instead of once a day. Again, I really appreciate the support and friendships formed with other bloggers but I simply can’t keep up.

I think, too, I have oversubscribed to blogs in general and, especially to those that deal with grief. The kinship and support exchanged with those bloggers continues to sustain me but also makes me sad. I can hardly cope with my own sorrow about Anthony, so reading about the grief of others is very hard – too hard for me at the moment. For those of you who I have become close to, we have each others’ emails so we can still keep in touch. Please feel free to email me on juligoyder@gmail.com

Years ago, when Anthony was younger and still milking his cows, he would have a mini-rest after lunch and that would sustain him for the afternoon ‘shift’. He would have a solid sleep for around ten minutes then get up again, full of energy!

The memories, all mish-mashed now into the present, are sometimes heartbreaking for me, but not for him, thank God. He is okay; my husband is okay; he is being well looked after in the nursing home; he is warm; when he is confused, the nurses reassure him. And tomorrow, I will go in and stay with him for the afternoon and ask him if it is okay if I lie on his bed while we watch TV ….

Resting.

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A bit like the weather

At the nursing home, Anthony was up and about this afternoon at about the same time he was in bed yesterday. He was lucid, mobile, vocal and quite jaunty.

To me, Dementia resembles the unpredictability of the weather, about which you can do nothing. The other day, a tree was uprooted and fell down during a storm; the next day it poured with rain; the next day it was bright sunshine; and today it is a bit of both.

There is nothing anyone can do about weather fluctuations – nothing. Forecasts can be wrong and often the weather will change drastically from what was expected to something totally different. A storm may shove a sunny day aside and vice versa. And there is nothing you can do about it. Nothing.

Dementia is like this in so many ways. One day, at exactly 10am, Anthony might be able to answer the phone and have a coherent conversation with me; the next day he might be unable to do either. Despite the careful timing of his PDD medications (just like I used to do at home), sometimes he has a huge appetite and other times he has forgotten how to eat. Sometimes he can almost run, using his walker and other times he can’t even take a single step and we have to get the wheelchair.

With over ten years of nursing experience up my sleeve, and a PhD about Alzheimer’s Disease, you would think that I’d have more understanding of the kind of nuances that occur when Dementia has climbed onto the back of another disease like Anthony’s Parkinson’s. And yet, every day is a surprise for me – sometime wonderful, sometimes awful, and sometimes in-between … a bit like the weather.

So what do you do when the weather isn’t what you expected?
You accept it of course, because you have no choice.

[Note to blogger friends: I am still not receiving email notifications of your posts so have been using the WP Reader. This is a much better way for me for the time being but I am not keeping up with you all and I apologize].

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