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Dangerous driving

by jmgoyder

I haven’t written about the car accident for awhile because I have been too anxious and shaken, and have not wanted to publicize details that might seem like an invasion of privacy. So I haven’t posted photos or named the children for this reason and will not do so now.

For those who don’t know, eight weeks ago today, Ming took his little cousins and a friend for a ride on the back of his ute (truck), then lost control on gravel about 2 kms from home. I do not want to replay the horror of that night or talk about the details. Instead, I want to say how grateful I am that everybody is recovering well despite multiple fractures including spinal and that yesterday we got the good news that two of my nieces got their neck braces off and the one nephew will hopefully soon be able to walk again (but I don’t know how soon). The friend is recovering well from her badly broken arm but her best friend, my niece, will still be in a neck-to-waist brace for many weeks (she is the one who told me to stop inboxing her, beautiful brat!)

My whole family continues to support each other, with humour, empathy, a couple of arguments, reconcilations, renewed love for each other and enormous mutual support. So I am very proud to belong to such a family – my mother, brothers, sister-in-laws, and the kids – where forgiveness and generosity are so natural.

Ming has now been charged with five counts of dangerous driving causing bodily harm and tomorrow we see the lawyer and barrister who are taking his case. My family and friends have provided many character references for him that will hopefully help but we still don’t know the court date.

In Australia there are three levels of driving offences – careless driving, dangerous driving, and reckless driving, so Ming is in the middle. Of course I am terribly worried but I didn’t realize how worried I was until the wash of relief that all of the children will be okay – even my niece who is still in the brace and oh how I wish I could wear that bloody thing for her.

On the cusp of what if? it is difficult NOT to imagine how much worse this could have been. Yesterday, at another family get together, the children all said how haunted they were still and my heart breaks that they have this memory. I guess it will stop any of them from driving dangerously.

Ming, despite being very open about everything else in his life to me, is strangely silent about the accident and seems to just want it to go away. I understand that and I also understand how reading the character witness statements upsets him. Despite his shock and remorse and anxiety about the kids, he has that attitude of moving forward. I don’t understand his resilence any more than he understand my lack of it.

Dangerous driving is dangerous driving so please warn your younger loved ones that a joyride of this type is not worth it.

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Dementia is not contagious!

by jmgoyder

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).

Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers

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Showing off, peacock-style!

by jmgoyder

King (blue) and Prince (white) have taken a liking to flirting with the peahens just outside my office door. Needless to say, and the pictures show this I hope, the two white princesses are indifferent. King and Prince have a fraught relationship, but they never fight because Prince, being younger, always capitulates and stops showing off when King comes along.

Gutsy9 came to my office door, a bit confused, and wanting a pat!

Animal Australia Birds Happiness Humour joy Wings

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Breaking nursing home rules!

by jmgoyder

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!

Australia Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Western Australia

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My baby chick becomes a show-off!

by jmgoyder

This is Gutsy9 flaunting her unusual feathers today. She is ‘pied’ – half blue and half white. We still don’t know who her parents are exactly because we have too many peas (three whites and 12 blues) and none of them wanted her so she was mine from day 1. (Previous posts describe this).

Peafowl are tactile defensive (they don’t like being touched) but they will take bread or any other tidbits from your hand if you are patient. G9, having been hand-raised by me, is unusual in this respect. For example, today, she came up to me when I was hanging out the washing and she sort of purred until I reached down to stroke her neck and every time I stopped, she chased me for more.

Happy birthday Gutsy9!

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Ming’s scoliosis decision

by jmgoyder

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.

Family Grief joy Teenagers

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Bravo to my family

by jmgoyder

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!

Family Friendship Grief Happiness joy Teenagers

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What’s more important – to love, or to be loved?

by jmgoyder

Yesterday, after doing hours of paperwork and three related appointments, I finally got to Anthony’s lodge at 5pm and something in his face lit up. “My beautiful girl!” he said (now that I am 54, being called a girl always works a charm on me). We gave each other the usual hugs and kisses and then I sat down to tell him the latest about my nieces and nephews, my Centrelink adventure and other things, and poured him a small whisky. I knew I couldn’t stay long as I had to get groceries before the shops shut, so he got a bit upset when I had to go. I managed to jolly him out of that somehow and left reluctantly.

At the doorway to his room, I paused, as always, and said to him, “I love you so much, Ants” and he said, “When you go I won’t have anyone to love.” So then of course I ran back to him for one more hug and he was okay, knowing he would see me tomorrow (which is now today).

After getting groceries, I headed for home with his words resonating and I realized, for the millionth time, what an amazing person he is to want to give love more than to receive love.

Ming, at 19, doesn’t really understand why I go into the nursing lodge, take Ants out for cake and coffee, and/or on my errands, or home on weekends.

Me: Because he is my husband!
Ming: But how can you stand it, with Dad like he is? It’s no fun for you and the psychologist said you’re supposed to be having a bit of fun in your life.
Me: Because I love him and I can make it fun now I’ve stopped succumbing to the sadness so much. Anyway, I like going to cafes and so does Ants.
Ming (bewildered): Okay, whatever.

One day, when Ming is married to someone (who I hope will be amazing!) he will understand something about love that I didn’t really ‘get’ until now: that the gift of love is found inside every moment that you give it and not in how much you receive it. I certainly didn’t see it this way when I was his age so why should he?

So to both my beautiful boys: I love you.

Family Friendship Grief Happiness joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Teenagers

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From heart to heart: The Dr. Says

by jmgoyder

I have made many friends in the blogosphere, one of whom is Sandra Callahan. She is wise and funny and positive and she and I share some very similar experiences. We have supported each other through many ups and downs and yesterday she made a comment on my post that compelled me to rethink yesterday’s doctor’s appointment with Anthony during which he described his dreadful terror the night before as ‘a bit of fun’. Sandra said, ‘He must have been embarrassed by his behavior. I cannot imagine how scary it must be when he doesn’t recognize people and they are trying to force him to do things he doesn’t understand.’

Sandra’s comment made me realize that Anthony’s bravado with the doctor was to cover his embarrassment and, even though I was aware of this at the time, it didn’t really hit me until I read Sandra’s wise words. Of course he was embarrassed – to be confused, to have been terrified of nurses, to have possibly made a fool of himself, and to have worried me so much. Anthony’s ‘bit of fun’ was his way of covering up his embarrassment and I understand that much better today than I did yesterday thanks to Sandra. She has once again helped to sharpen my sense of perception with her amazing empathy.

Our hearts have a lot in common except for one fundamental thing: mine is still beating loud and clear and Sandra’s is failing. She has congestive heart failure and is dying. But she is also living to the utmost, encouraging people like me and talking honestly about dying. Her book is now available and here is the link.

From my heart to your heart, Sandra.

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“I’m so much better, Jules!”

by jmgoyder

Today I picked Anthony up from the nursing lodge to take him for a doctor’s appointment to get some of his never-ending skin cancers burned off with that ice stuff. Having been a farmer all his life, out in the full sun before the days of hats and sunscreen, he develops many of these on an almost daily basis – new eruptions from old sun damage – on his arms, face and back mainly. Even though it hurts, Anthony has a strange liking for the procedure, mainly because he really likes seeing our doctor and so do I.

In the car on the way to the doctor’s office I asked him did he remember what had happened last night and he surprised me by saying yes.

Me: Well I think we should tell the doctor because this seems to be happening more often and you sounded so terrified.
Anthony: I didn’t want to be ordered around.
Me: So you fought the staff, told me I was part of a conspiracy against you, thought you were being tied up, and frightened the hell out of me.
Anthony: They deserved it.
Me: But they were just trying to put you to bed! Was anyone being nasty or pushy?
Anthony: Not really.
Me: So why did you fight them?
Anthony: Oh, just for a bit of fun.

AAARGH!

Before I go on, I should explain that this kind of conversation flows much more smoothly on the page than it does in real time. In real time, there are a lot of pauses and sometimes Anthony’s voice is so soft now that I have to say, “what?” or “say that again?” before I understand what he is saying.

Anyway, his ‘bit of fun’ comment made me laugh, until I became a bit cross.

Me: So you think it’s funny to torment the nurses and make me cry for worrying about you.
Anthony: The first thing yes but not to you. (He reaches out and pats my knee as we pull into the doctor’s parking lot)
Me: Well I’m going to ask the doctor to prescribe you with something for when this happens again.
Anthony: So you want to drug me.
Me: Nooooo! I just don’t want you to have one of these terrified episodes again with nothing to calm you down. Even I take something like that now and then!
Anthony: Yes, but you probably need it.

He has a point there!

When we went into the doctor’s office, he already had his ice-spray thingy in his hand like a weapon (a little joke he and Anthony share), but I told him that our visit was two-fold and then described last night’s incident, including Anthony as much as I could, despite his point of view being different from mine. He, too, thought it was funny when Anthony said it was all a bit of fun and Anthony’s eyes did that rare twinkly thing and he nearly smiled.

A new medication was prescribed, several skin cancers burned off and we left feeling as if we’d been on a social visit. By that time it was early afternoon, so I suggested we eat at a restaurant but Anthony wanted MacDonalds (most unusual!) So we got burgers from a drive-through, went to a park and ate them in the car (much easier than getting Ants in and out of a restaurant), then went to a bakery and bought a fancy tart which he vacuumed up, and a big chocolate cake for the nurses. By the time we got back to the nursing lodge, he was exhausted.

Okay it is now nearing the time I usually ring Anthony to say goodnight. The new pill won’t be available until tomorrow so we may well have a repeat of last night’s situation but this time I will be ready and I won’t let either of us be disarmed. I have to be prepared for the worsening of Anthony’s condition even though every single morning he says to me, “I’m so much better, Jules.”

Family Friendship Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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jmgoyder

wings and things

Dangerous driving

Dementia is not contagious!

Showing off, peacock-style!

Breaking nursing home rules!

My baby chick becomes a show-off!

Ming’s scoliosis decision

Bravo to my family

From heart to heart: The Dr. Says

“I’m so much better, Jules!”

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