jmgoyder

wings and things

Dementia is not contagious!

A lot of people are afraid of dementia, whether it be Alzheimer’s Disease, Parkinson’s Disease Dementia (my husband Anthony’s type), or other variations. It isn’t just the fear of developing the disease one day, it is also the fear of anyone who has the disease.

As someone who worked in nursing homes for many years, dementia doesn’t scare me at all but I guess, if you haven’t had that kind of experience it could be scary visiting a loved one who used to be the life of the party, or extremely energetic, or with a dry, sarcastic wit (Anthony) only to find them either silent or saying what sounds like nonsense.

But it’s not that scary once you get used to it – it’s not! You learn how to listen differently, you learn how to be comfortable with silence, you learn how to love the person again for what he or she is now, instead of pining for an impossible past. You learn to be unafraid, you learn how to give, you learn how to go with the flow, you learn how to treasure each and every moment no matter how bizarre or strange.

“I just want to remember him/her the way s/he was” is a common sentiment expressed by friends and family of people with dementia and this is understandable, yes, but it is also cruel and selfish and horrible because people with dementia are not dead. People with dementia might be confused, cognitively, but there is nothing confusing about the emotional need to be hugged or acknowledged or visited. Why is this so scary for so many of us?

Before this happened to Anthony, and despite my nursing experience, I, too, found it incredibly difficult to visit people I knew who had developed dementia on top of everything else they were already suffering. Can you imagine how terrible it would be to be so sick, so confused, and then abandoned?

There are not too many visitors at the nursing home where Anthony resides and, when I was a nurse, there were very few in the three nursing homes in which I worked. Loneliness is universal and has nothing to do with age or dementia. People with dementia are lonely; people with dementia are human; people with dementia are often aware of the dementia and need comfort and reassurance, or just a hug. A 5-minute visit is enough to make a bad day good.

This is not about Anthony exactly because he gets a lot of regular visits from family and friends but, because I am in there nearly every day, I see the blank, lonely expressions on many of the other residents’ faces and have now made friends with several people there who never seem to have a visitor. I have also made friends with the relatives who do visit but we are a tiny group.

And the point of this little rant? If you have a friend or relative with dementia, please don’t abandon them. They need you. If they don’t recognize you, so what? Just give that person a hug or a pat on the shoulder and then you can go back to your life knowing that you will probably have made that person’s day shine!

BTW dementia is NOT contagious! (Anthony said that to me today).

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Who are you and why are you so nasty?

I have a rather nasty taste in my mouth at the moment because I have been reading about some people’s taste for nastiness, or cyber-nastiness to be exact – well that’s what I call it anyway. A few moments ago I saw a lovely photo on Facebook (yes I am back on it!) of a black man reaching his hand out to a white baby.

I liked the photo and its caption and found it heart-warming. So I was surprised to read some very nasty comments and interchanges in response to the photo. Various critical points were made by some and phrased politely, but other people became quite hateful in their comments.

Lately I have been seeing more and more of this on the internet – people voicing nastiness with such ferocity it is breathtaking. Of course, with Facebook and WordPress and other social media sites, there are rules, but obviously this is almost impossible to monitor unless someone is being obscenely abusive.

The thing that most bothers me about this trend is the anonymity with which nasty comments, statements, opinions etc. are made. I read a couple of news feeds and often a human interest article will be attacked by certain readers and then readers will attack each other with no respect for the fact that we are all real people. Many of the nasty things written on social media sites would never be said face-to-face because in real-life, real-time situations, there is usually an expected decorum. Not so on the internet. Anybody can pretty much say anything they like to anybody else behind the safety of their computer or phone screen.

But why? Why do so many people expend so much time and energy on being nasty on the internet? I was the recipient of some rather nasty commentary on my friend’s blog the other day. The person commenting was not known to me so I was flummoxed by his passionate diatribe against my rather innocuous comment and he proceeded to crowd my friend’s post with long-winded speeches against me, and against my friend who rose to my defense. I responded a few times then gave up because I realized everything I said just seemed to fuel his irrational fury. I would love to recount the dialogue but respect my blogger friend’s privacy so suffice it to say that my initial comment had nothing to do with politics, race, gender or religion – ie. it was not an attackable comment!

The experience was a learning curve for me, so I am glad for it because it has made me even carefuller of my words than I already was – ha. But the main thing this experience showed me was what cyber-bullying might be like for a young person. One of the things this particular bully did was to make assumptions about me and to label me; when I didn’t immediately reply, he equated my silence with guilt; when I did reply, he launched another sermonesque attack. Even though I was astounded and felt extremely misunderstood, I wasn’t hurt – more bemused I guess.

But if I had been 12 or 15 or even in my 20s, I would have been profoundly hurt and affected. And this, I think, is what is so worrying about social media for our beautiful young people. If you read of cases of cyber-bullying and its effects on so many young people (including suicide), it is easy to brush this off as a passing phase, a bizarre incident, or ‘my kid isn’t on Fbook so s/he’s okay’.

I am not saying that my above experience was a case of cyber-bullying exactly. After all, I am an adult and I can take it. But if I had been a kid, I would have crumbled.

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Apologizing to a microwave

Now that Ming is living in his renovated shed (which, by the way, is much more spacious than our house!) I am mostly alone. Of course I am out most days, visiting Anthony, or bringing him home, or taking him out, or running errands, or visiting friends but most of the time I’m home alone.

Don’t get me wrong – I actually love being alone and always have. I never feel lonely, have lots of fantastic friends and family that I see regularly and Ming wanders over from his shed frequently (in search of food!) So being alone does not equate at all with being lonely – well not for me anyway.

However, my aloneness was brought into sharp focus this morning when the microwave beeped for the third time (rather impatiently I thought) to tell me that my coffee was ready. I rushed over to it, saying “Sorry, sorry!” Then, as I took my coffee out, I said, “Thanks!”

It was only as I took my first sip that I realized what I’d done, and couldn’t stop laughing.

You will be relieved to know that the microwave didn’t answer me.

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Breaking nursing home rules!

For the last couple of days, I have brought Anthony home for the day. On Sunday, friends came over to see him/us so that was fantastic but yesterday he opted for a quiet day with just Ming and me. Today, I just went in late (4pmish) and grabbed him to come with me to do a few errands: groceries, returning dvds, pizza for Ming etc.

So, as I was trying to get him to walk to the door and outside to the car, I asked the couple of nurses who were helping us if they liked pizza. Their eyes lit up (as mine do when I hear ‘pizza’) so I said I was going to get pizza for Ming and I would love to bring them some too. Then, a very interesting conversation ensued:

Nurse 1: We’re not allowed to accept gifts.
Me: It’s not a gift – it’s pizza!
Nurse 2: I like pepperoni.
Me: What is the problem? I hate these stupid rules.
Nurse 1: Well, if you give us anything, and we accept it, it could be misinterpreted as bribery.
Me: What?
Nurse 1: No, no (laughing) we know you but the rule is that if we accept any gifts from relatives we might be in trouble because it might seem like the relative is doing it to get better care for their loved one.
Me: OMG but I bring chocolates and pistachios and olives in all the time and share it around. Does everyone think I’m a briberist?
Nurse 2: Of course not! We know you but we just have to be quite careful about this sort of thing, because of the rules.
Nurse 1: I like Hawaiian.
Me: Okay, so when I come back with Ants, I’ll just put the pizzas at the desk anonymously?

Both of the nurses nodded and we all had a chuckle but as Ants and I drove around town doing my errands and then ordering the pizzas, I asked him what he thought about the bribery nonsense and he said, “That’s what it’s like at the school, Jules.” (He always calls the nursing home ‘the school’).

Anyway, I wasn’t taking any of this seriously until we got back to the nursing home. The first thing I did was to place three large pizzas on the nursing desk (nobody was there so my secret was safe). Then I went back to help Ants into his room and chair. I turned his light and television on and then we shared a bit of his own pizza, then I left.

On my way out, I heard one of the kitchen staff quizzing Nurse 2: Where did those pizzas come from?
Nurse 2: I have no idea – they just appeared! But I am really grateful.

As I leapt to the exit door for a quick getaway, Nurse 2 called out, “Have a great evening, Julie.” I just hope that when they eat those pizzas, they also eat the boxes because my fingerprints are on them!

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Ming’s scoliosis decision

Yesterday Ming made the decision to have the surgery on his spine and we will know when in the next week or so. The decision was not make lightly and no longer has anything to do with aesthetics (originally he was more upset to see that his straightened spine was now five degrees more crooked than it was post surgery in February 2012.) Now it is more to do with the ache at the site of where he fractured a length of titanium when he lifted something too heavy on our farm some months ago.

Apparently the fractured piece will not be replaced but instead will be mended with some sort of screw, then anchored to neighbouring vertebrae with more titanium and surrounded by bone from the bone bank. The operation will only be two hours this time, with no spinal cord monitoring required (the original surgery was around nine hours).

There is no guarantee that he will be straighter but there is hope that the pain will go away. The surgeon is now insistent that he stops all manual labour, not just now, but forever, which is something we were naive about last year. I guess we thought that once he’d healed he would once again be able to do anything he wanted to do; we didn’t understand the foreverness of his scoliosis condition, or perhaps we just didn’t want to accept it.

As with everything, Ming is coping much better than I am with the prognosis – surgery or not – but I am doing a very good job of hiding how sad I feel that my great, big, strong footballing, motorbike riding boy will never be able to bend, turn, lift etc. like most people can. So, yes, I am a little tragified but he isn’t and is very philosophical, which is great.

It’s all going to be fine.

Ming's Christmas present 2010 - 'Black beauty'

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Bravo to my family

I have been refraining from talking too much about about the accident for the sake of my family’s privacy but it was an enormous relief today to welcome home my niece finally out of hospital yesterday. My brothers and sister-in-laws, and their older children (not involved in the accident), and our mother, have all been through hell of course. Ming, Ants and I all saw my niece in her brace, and her best friend (also in accident), and we even had a few laughs.

The previous week, Ming and I ventured down to see my younger brother and sister-in-law’s three children and it was wonderful. The children were so hilariously philosophical and my sister-in-law cooked a better meal than I have ever cooked (according to brat, Ming!)

Of course, physical recovery for all five children will take time but the fact that they are all out of hospital and home again is a wonderful thing and the idea of moving forward now seems possible. For many of us, the psychological and emotional damage will probably take longer. Children have a much better resilience than adults – thank goodness!

As the children don’t read this blog, I just want to say here how much I admire my brothers’ families – each, single individual has contributed to the love we share and, even though this is getting overly sentimental, I just have to say that I feel blessed to have such a family.Our mother has been a rock and, weirdly, I have felt Dad’s presence throughout this horrible month.

Bravo to my family and bravo to Meggles!

Meg and nibbles

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To my son, Ming

I have never loved anybody as much as I love you.

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Banishing grey

This afternoon I ventured outside to catch a glimpse of something, anything, to free myself from the grey hopelessness of exile.

Earlier in the day, I had been to the local shop (in this little country town we have one shop, a butcher’s, a pub, a garage and a post office). For the last few weeks I have been reluctant to go to any of these places for fear that someone will ask me about Ming’s car accident, for fear that I will stumble into defensiveness, for fear that I will cry in public. So far, I have braved the shop twice. Today was my third time and I thought I would be okay, but when the shopkeeper looked at me knowingly and asked how I was, I started to say fine then, without warning, my eyes filled with tears and, when she reached over the counter to hug me, I was undone. Thankfully there were no other customers and I recovered myself quickly, making a quick escape to home – to my hiding place.

Yesterday someone asked me how Ming was coping with the fact that his ute (truck) was wrecked and the question almost felt like an assault. “He doesn’t care in the least about his ute; he only cares about the children injured. The ute doesn’t matter to any of us,” I said, my heartbeat thundering.

This afternoon I ventured outside to catch a glimpse of something, anything, that wasn’t grey. Each photo I took reminded me of how important hope is, and of how important every single member of my family is to me.

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A strange incident at the nursing home

The week before last there was a Melbourne cup luncheon at the nursing home (the Melbourne cup is Australia’s annual horse race – ‘the race that stops the nation’). I have mixed feelings about this race but that is beside the point of this post.

Anyway, when Anthony still lived at home, he organized sweeps with family, friends and farm workers and he loved doing this and was very good at it. Horses were picked, money was collected and lists were made; it was great fun. Obviously he can’t do this now so I did a small sweep with just Ming, Ants and me, but it felt kind of false and feeble compared to the efforts Anthony made over the years. Oh well.

On the phone that morning, he said he had reserved me a seat at the nursing home luncheon so I hurried in to be there in time for the televised race at noon. On entering the very crowded ‘events’ room, one of the staff pointed to where Anthony was sitting. There was no chair for me beside him and I noticed there were no other family members which surprised me a bit, so I squeezed in next to him and sat on his walker. Around sixty residents were sitting around three long tables but there were only a few from Anthony’s ‘high care’ section. Each resident had either a glass of wine or beer and plates of nibbles were placed here and there so people could help themselves. I filled Anthony’s plate and helped another man too and then the race began on the television. Staff lined the walls just as excited as residents and once the race was over, the woman in charge of handing out the winnings did so with humour and I broke it to Anthony that we hadn’t won anything which he took in his stride.

At that moment, Anthony said, “Here, Jules, have some of this – I can’t eat it all.” So I spotted a spare spoon and scooped up a bit of potato salad which was delicious. “Have some more,” he said, delighted, but as I went to do so, someone tapped me on the shoulder. I looked up and saw that it was the nursing home manager.

“Julie, can I have a word with you?” she said, beckoning me to follow her into an adjacent room.
“Am I in trouble?” I said, jokingly, following her.
She turned around and frowned. “I cannot have you eating the food. I have already turned away two families because we can’t cater for family members on this kind of occasion.”
I felt shocked and humiliated and apologized profusely, so she said, “You can stay but don’t eat the food.”
“Anthony said I was invited,” I said.
“No,” she said.

I wanted to cry, I wanted to rant, I wanted to know who she’d turned away but I knew, as soon as I re-entered the events room because I immediately noticed the misery on Natalie’s face (Natalie is a resident in high care and is usually robust and full of laughter; her daughter and son visit every day so we have become friends. Their absence and Nat’s uncharacteristically long face told me what must have happened. I patted her on the shoulder but she hardly responded).

I then resumed my seat on Anthony’s walker, my face flushed with a mixture of embarrassment and rage. Once again, Anthony offered me some food from his plate but I whispered, “I’m not allowed to – have just been reprimanded.” He shook his head, disgusted, as I nervously helped him manage to feed himself. Suddenly plates of dessert came out and one of the staff serving said, “Hey, Jules, do you want some cheesecake?” I shook my head and said, “I’m not allowed.”

Later that week I bumped into Nat’s daughter who was looking glum. Like her mother, she is usually full of smiles. When I asked her what was wrong she told me she had been kicked out of the Melbourne cup luncheon and her mother had been miserable ever since. We had a brief, whispered conversation in which we both decided that it wouldn’t be tactical to complain.

I understand – of course I do – that having to cater for every resident’s family members for a big lunch would pose logistical problems but the fact is that in the nearly two years since Anthony has been a resident at this nursing home, I have only ever met a handful of family members who visit their loved ones, so it’s not like there would have been a crowd.

After the lunch was over that day, I went to the nursing manager’s office to once again apologize and tell her that I hadn’t known the rules. I guess she could see I was nearly in tears so she suddenly turned her usually unsmiling face into a half-smile and said, “It’s okay, Julie, you didn’t know.”

For the first time in ages, I cried all the way home.

Note: I have stopped calling it a nursing lodge and am calling it what it is – a nursing home.

The photos are of times gone by.

A Goyders Dardanup

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Calm before the storm?

Today Ming was charged with a crime (related to the car accident four weeks ago) and the case will be dealt with in court in the next month or so. After the police station, he and I went to the criminal lawyer recommended and we were given some very good advice. It has been a day full of expected shocks and unexpected shocks, like the possibility of jail, but Ming is okay with whatever punishment he receives for this stupid mistake in judgement. He is more concerned for the children who were injured in the accident and so am I.

It doesn’t bode well for Ming but neither of us care about that because it is nothing compared to the mix of relief and anxiety about all of the children’s recoveries and healing, especially my girl still in hospital, and my boy having to bend his leg for the first time tomorrow, and for the friend whose broken arm got infected, and to my two girls who are still in neck braces.

The fact that none of the families have laid blame on Ming has been a wonderful thing but that is irrelevant to the case and to our concern for the kids. I already loved those children but, until now, I didn’t know how much and it is up to the sky and beyond.

I hope that this temporary calm will make the inevitable storm more manageable for all of my family and us but obviously we will have to all wait and see in different ways.

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