jmgoyder

wings and things

One hour

It is 8.30pm and I haven’t seen Anthony today because Ming and I have been so busy cleaning up and organizing things for his 20th birthday party on the weekend. With at least 70 people expected, I am, to say the least, a tad nervous, but they are all wonderful kids, and a few of the parents are coming too in order to help keep things on an even keel!

So it is one of the rare days I haven’t seen Anthony. I warned him of this yesterday and he was okay about it and I tried to ring him a few times today but then gave up. He has definitely forgotten how to answer his phone now and I am becoming as frustrated as the many friends and relatives who keep trying to ring him.

When the nurse rang me half an hour ago, I was shocked to hear Anthony yelling ‘you bitch’ over and over in the background and when the nurse got me on the phone to him, he yelled at me too. Ming tried to talk him through taking the sedative (only needed occasionally) to no avail, and the nurse said she would ring me later. In the background I could hear Anthony yelling “get away from me, you bitch” and “Jules! Help me!” and to Ming, “I’m being tied up, Ming!” and “You’re like the rest of them, Jules, you bitch” and “I don’t trust you, come and get me right now, Jules!”

And this went on and on over several phone-calls back and forth from staff to me. This kind of episode doesn’t happen often – maybe once a month – so last time I took Ants to our doctor, I asked for something to calm him and he prescribed it. Tonight I said to the nurse-in-charge who first rang me that there was an emergency drug for this but, during a later phonecall, I could hear Anthony yelling “No!” and the nurse told me he wouldn’t take it or go to bed.

Sobbing with anxiety, I ended up yelling at Ants on the phone to pull himself together, take the pill, go to bed, stop yelling at the nurses, and that I would see him first thing in the morning. When he didn’t calm down, I screamed at him over the phone: “Stop it, Anthony, stop it! This is not you – it is the stupid disease – I will see you TOMORROW!”

I think he finally accepted this and the nursing staff said he was calming down and they would only ring me back if things escalated again.

And tomorrow? He won’t even remember. So was/is this a psychotic episode? Hallucinations? If so, what triggered this – not seeing me today?

But he sounded so terrified, hence his uncharacteristically abusive language. Five phone-calls, five minutes x five, and five moments when I decided to stop crying and to start yelling at him.

Will he be asleep by now? I don’t know, but I am so tired and defeated and shocked now that I’ve decided not to care about it until tomorrow. Otherwise I will go mad.

It is 9.30pm.

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A tip for taking people with Parkinson’s disease out and about

As Anthony’s Parkinson’s disease (diagnosed several years ago now) has worsened, it has become increasingly difficult to take him out, or bring him home from the nursing home. For a few months last year, I relied on the wheelchair taxi because he had become so heavy to manouevre. Then, with some tweaking of his medications (by his specialists and doctors) and with a renewed sense of determination on my part, and special attention to timing, I began again to take him out by myself.

The timing of Parkinson’s disease medications is vital. If Anthony doesn’t get his 11am pill, he is paralysed by noon. The staff at the nursing home have been brilliant at getting this right. This means that if I pick him up for lunch he is able to walk (using a walker) to the car, get in with just a bit of a shove from me, get out again with a 1, 2, 3 pull up from me, walk into a cafe or whatever, eat some cake, and walk (using the walker again) back to the car.

His next scheduled pill for the day is 4pm but I really think it should be 3pm because that is the time that he always begins to falter, with his words, movements etc. so, if he is home, I give it to him early because we have had some extremely difficult situations where I just cannot get him to move his feet at all, let alone walk. I guess we are getting to the stage now where I have to bring both the walker and a wheelchair with us if we go out.

The person who most inspired me to take Anthony out more is Terry at http://terry1954.wordpress.com/

Terry has been looking after her brother, Al for years and Al doesn’t just have PD, he also has MSA (see Terry’s blog for what this is like). Al is now bedridden and on the brink of death with Terry constantly by his side. She has always inspired me in the way she copes with pragmatism and prayer in equal amounts.

But, before Al reached this stage, Terry used to to take him out and about, to his favourite shops and restaurants. I read about these escapades with mixture of delight and admiration, but what really struck me was how much joy this gave Terry herself. She is the person who gave me the impetus to take Anthony out and about more.

And, if I get the timing right, Ants and I can still have a rollicking time (well sort of!) However, here is where Terry and I are different; she took Al to places Al liked to go to (she is unselfish), whereas I now take Anthony to places I like to go (I am selfish).

However, that is my tip: instead of seeing it as a chore to take someone with PD or any other disease out of the nursing home for a bit of a break, think of where YOU would like to go. That way, the outing is transformed from a job into a joy.

Just don’t go to the beach (wheelchairs don’t do well on sand!)

This post is dedicated to Terry and Al.

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A caregiver’s perspective

The term ‘caregiver’ is relatively new to me and I am not quite comfortable with it because it has always seemed so weird when various professionals (doctors, nurses, nursing home staff, receptionists) have asked me if I am the caregiver/carer. Whenever this question was asked in front of Anthony, over the many years of his various illnesses, I always used to say, “No, I am his wife.” The caregiver/carer identity always seemed somehow insulting to him so I found it hard to accept.

I had to accept this new facet of my identity of course because eventually I had to apply for a ‘Carer’s allowance’ so I could get paid a little bit of money to make up for all the leave I was taking from my job at the university. This was because it became more and more apparent that I could not leave Anthony alone as he was prone to falling over, nobody could get the Parkinson’s medications quite right (a common dilemma), and sometimes Silver Chain staff couldn’t come when I needed to go to work. After two years of this tenuous situation it all culminated in my resignation, Anthony’s admission to a nursing home and Ming’s first scoliosis surgery.

This was around the time I began this blog and, even though I know I can go back and look at what I posted during these difficult times, I don’t want to until my own memory of putting my beautiful husband in a nursing home kicks in. Of course I remember the trauma of this happening and Ming’s impending surgery but I don’t remember a lot of what happened between then and now.

Now, I only know the joys and anxieties of each single day; today I brought Ants home for awhile, then took him to lunch at my mother’s, then took him back to the nursing home where ‘goodbye’ was fine because he knows he will see me tomorrow. Ming can’t understand why I go in almost every day now when I didn’t used to and he even gets a bit jealous, so I have to be quite careful to divide my enormous love for both of them evenly – ha!

I used to see people wheel-chairing their loved ones around supermarkets or down the street and I would think, oh how can they bear it? Maybe, when people see me (still relatively young), wheeling Ants into a cafe or shop, they think the same. I don’t know. But for the moment I actually find these outings great fun even though it probably looks like an OMG-how-ghastly-for-her situation.

Today, on the way back to the nursing home, I stopped at the grocery shop and left Ants in the car (too hard to get him out and back in again) and as I approached the car with the groceries, I saw him smile a little bit.

Once I got back into the car, I knew it would only be a few minutes before I would have to leave him at the nursing home and say goodbye and I was feeling a bit crappy until Anthony said, “You really are very beautiful, Jules.”

The caregiver/carer role can sometimes be reversed in such a way that is SMACKS you in the face and makes you glad, makes you think, makes you wonder. Thanks Ants – you made my day!

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Prayer

I am not really sure what prayer is any more, but, whatever it is, I have rediscovered it.

Earlier today I reblogged a post written for Robyn by her friend, Resa, but like many a reblog, it didn’t get read by that many people on my own blog, so I thought I would add something here to encourage people to check it out AND to check out Robyn’s own blog at:

My Story

I have known Robyn since I began blogging and was compelled by her courage in dealing with debilitating physical pain, her talent for photography and poetry, and her immediate and generous friendship to me. But a few months ago she stopped blogging and I knew things must be badly wrong, so I sent her a couple of tentative emails, worried that I might be intruding, but she replied and told me things were not so good.

Since then, I have worried and wondered and prayed and been scared for her so, it wasn’t until Resa posted about Robyn that I knew about her impending major hip surgery this week. I cannot imagine the kind of physical pain Robyn has endured over the years, but I can imagine the hope felt by Robyn, and her family and friends, that this surgery will vastly improve her condition, and that it will take away the pain.

Many people who follow this blog already know Robyn, but if you don’t, please spare a thought and a prayer for her this week. She is one of the best people I have ever been blessed to meet.

I salute you Robyn, over and over again.

This is a prayer.

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Out to lunch!

Today is the fifth day I have been out to lunch with various family and friends AND had visitors in the evening. I feel thoroughly resocialized!

Yesterday was lunch at the local tavern with Ming’s best mates’ families. The day before was lunch at a restaurant with Ming, Meg and Anthony, where Anthony proved that his appetite is still quite healthy by vacuuming up two dozen oysters naturale AND a chocolate dessert (even though he had already had his usual roast dinner at the nursing home!)

And then there was lunch with with an old friend whose husband is in hospital, lunch with Tony (which I already blogged about), lunch today with Anthony’s niece who is also my niece but she is older than I am but looks younger (grrr!), then drinks here with another old friend, her husband and gorgeous daughter, then last night a rollicking time with my first niece, Ash, and her Scottish husband, who have both moved back to Australia.

Happiness can be a bit exhausting. Oh yes, and the peahens are gradually returning!

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How to apologize?

The reason I have added a question mark to the title of this post is because I don’t know the answer in general. I only know my own way of apologizing, which is pretty much to roll in the dirt, say I am sorry over and over, and kiss the toes of people I don’t particularly like or understand anymore, hoping for some sort of forgiveness or reconciliation.

But there is something fundamentally skewed about this kind of apology because it implies guilt (mine – i.e. it is all my fault) and it also gives the person apologized to a very good reason to keep hold of his/her grudge, whatever it is. Sometimes that grudge has nothing to do with the present but has everything to do with the past and, when the past has somehow become toxic, you know you have a problem.

Ming and I were talking about all of this philosophical stuff today, after a fantastic lunch out with Ants and Meg, and we came to the conclusion that there were three ways to apologize and forgive: (1) Blip it, move on, act normal and civil, forget the hurtful things said/felt; or (2) Talk it through, be honest even if it means tears and/or recriminations, and tell me what the hell I have done that has hurt you so much; or (3) Distance.

Give me distance any day!

Sometimes Anthony imagines or hallucinates about past family conflicts and I have to reassure him that everything is okay now. I hate that he remembers incidents that are best forgotten and I hate that he forgets all is well now.

I always want to talk through these kinds of relationship conflicts – always! I want to put it all on the table, so to speak, but I am usually on my own because nobody wants to get into the nitty gritty of what the hell is wrong here, and nobody seems to want to apologize back!

Why?

I am so sick of saying I am sorry!

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Powerful!

I follow the blog of a wonderful woman, Nicole Cody, who writes with such positive, energetic wisdom that sometimes it takes my breath away. In her post today, she invites us to choose a “Power Word” for 2014 – see http://cauldronsandcupcakes.com/

Lots of possible words came to mind: gratitude, laughter, healing, energy, harmony … but then I suddenly realized that I wanted my own power word to be the word, power itself. Or, to be more exact, the word, powerful!

POWERFUL – yes, I like it!

For me, this word doesn’t mean that I want to stomp, Godzilla-like, on anybody or anything; instead, it signifies a transition from the flailing, exhausted, try-too-hard strength I already have to a more spiritual, muscle-bound ability to contend with all 2014’s challenges, and embrace all of 2014’s joys with the kind of gratitude that is loud and fierce and inviolable.

The weird thing is that as soon as I chose my power word, my limp became a leap, and my wrinkled heart grinned itself into a balloon.

Thank you, Nicole! This photo of Prince is for you.

IMG_2673

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My friend, Nicola

“Nicola” is a sort of pseudonym for one of my very best friends. The other night, Ming and I were invited to go to her place for drinks but the day got complicated with Anthony home again; unexpected visitors; food shopping; a dreadful hour back at the nursing home in the late afternoon when Ants was almost too paralyzed to get from car to his room despite my help; hurting my stupid back lifting him; Ming getting his bandages wet and me having to peel them off to see a much longer scar/wound than I’d expected, not being able to find the betadine, a rather nasty altercation with the beautiful brat, planning the exciting visit to see my youngest brother, wife and kids the next day and liaising with my mother about this; answering calls on my stupid, non-working, cutting-out phone; getting a headache; and forgetting to put beer in the fridge – argh!

But Nicola was expecting me so, by the time I’d done the bird feeding/watering/yarding, I was kind of ready to go but then Ming and I had another altercation and I ended up yelling at him because the same drugs that were making him all lovey-dovey are now making him monsterish – another argh!

So I rang Nicola and said we couldn’t come (I only told her a bit of the above which is already an abbreviated version of the hell of the day) and she said that it was okay.

I now think that the sentence, “It’s okay” is the best sentence ever invented because it says everything. When someone lets you off the hook of a commitment that you have broken by saying “It’s okay” your whole heart stops holding itself tight and starts beating out a beautiful soft song of gentle understanding and relief.

My reputation for letting people down at the last minute is something that I am not proud of but it stems from the days/years when I was looking after Anthony at home. I became reliably unreliable!

Thanks, Nicola, for your understanding and empathy and amazing friendship. You are a rock!

IT’S OKAY!

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An unexpected gift!

On Christmas Day, my mother (Meg) came over to the farm to have lunch with Anthony, Ming and me. Well, actually she brought lunch! You see we always have Christmas Eve at my mother’s place and she puts on a FEAST, so I figured I could cheat this year and not bother with my own feast and just feast on her leftover feast and that was a great decision haha! She even brought half of the giant pavlova which Ming and Anthony vacuumed down in record time.

Anyway, before we ate, my mother handed me a letter. “This is your surprise,” she said. I already knew she was bringing me a surprise and she had hinted it was a wheel of Jarlsberg cheese (my favourite), so when I opened the letter to read it I assumed that, instead of the cheese, she had decided to write me a loving letter. I already knew she loved me so I was about to say that I would prefer cheese until I began reading ….

18 December, 2013

Dearest Meg,

For many years back at each Christmas Rhonda, Geoff, John and myself, instead of giving to one another, look around to see where we might better place our giving – to someone needing a little tangible help. (We still give to each other a “little something”)

We have had Juli and Ming’s situation in mind, as in prayer, but we thought we should tread cautiously as not to offend Juli’s present somewhat fragile state of mind. So we did take our thoughts in another direction only to find what we had identified had already been resolved. We asked, what was the Lord saying to us?

Meg, we felt we needed to run this first by you as we would not like to add to the stresses Juli is undergoing, and the amount is really quite insignificant in light of what is down the track for her. Can we leave it to your judgement as how best to hand the money on to Juli. She does not need to know from whom it came. Note the cheque is payable to you.

We continue to pray for you all every day. We share your heartaches. We can’t begin to understand the feelings involved but we do understand the love of family and, of course, our love for you has always been a gift from God.

Sincerely,

Bev and John

So I read this letter out loud to Anthony and Ming while my mother smiled knowingly. When I got to the word ‘money’ I began to realize what was going on and my heart started catapulting with a mixture of excitement and anxiety (but mostly excitement). Then, my mother handed me a checque for $1,000!

I/we could not believe it! Okay so I remember vividly playing underneath Bev’s and John’s kitchen table with Rhonda when we were very little, and, more recently, I remember re-meeting Bev and John when they visited the farm with my mother several years ago but, despite how close these friends are to my mother, I don’t really know them very well because they live on the other side of Australia.

Bev, John, Rhonda and Geoff – I am at a loss as to how to thank you properly for this unbelievably generous gift of money, but I will try here: the court costs are going to be big but you have already covered the initial payment to the lawyer. I was so scared I wouldn’t be able to raise the funds and now I am not so scared, not just because of your amazingly generous gift but also because something about your gesture has eradicated all of my fear. My words are clumsy with gratitude – ha!

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Recovery

My mother and I went down south yesterday for an overnight visit with my younger brother’s family on their beautiful, remote block of bushland. Ming was supposed to come too but he is still struggling with post-op. pain and that horrible post-anaesthaesia blah so I left him home (and the little break was good for both of us!)

It was the first time we had seen the kids minus their various braces, splints, crutches and wheelchair (due to injuries sustained in the accident in October in which Ming was the driver). Of course, they are not completely recovered, but they are certainly getting there in leaps and bounds.

And they glow! These three children, one 13 years old and the twins, 12 years old, have always has a special glow about them. They are high achievers (as was evidenced in the school report cards they eagerly showed us), but they are down to earth and philosophical about the trauma they have been through. I watched my mother relax into their antics – watching them swimming in their beautiful, blue dam, making crazy jokes, doing card tricks, riding the 4-wheeler, munching out on my brother and sister-in-law’s amazing steak, potato salad, coleslaw and then pavlova, and my heart did a few somersaults.

We exchanged our Christmas gifts with each other and everyone loved what they gave and received, and I bantered with my nieces and nephews, unable to keep up with their clever witticisms, as usual! My brother’s quiet chuckle and my sister in law’s loud laughter (she and I are both rather loud and vociferous), and the children’s glowing eyes, were like some sort of blessing.

Another bonus was seeing my brother’s second oldest son who is a young replica of his dad. He adores me of course but soon needed to leave to see his mates – haha! As he was leaving, I said that I had a Christmas present for him and I wanted one back so he said have a beer. It was only later that I discovered that they weren’t his beers to give – cheeky, gorgeous brat! My gift to him was super hot chilli sauce – mmmm – he might not adore me so much any more! On a more serious note, it was great to be able to hug him after so long.

Driving back home through the forests of karri trees, my mother and I spoke of how this visit had helped to lighten the load of unbearable grief and anxiety. I am not a grandmother (and probably won’t be for some time!) but I can imagine how horrific it would be to be the mother and grandmother of so many injured (either physically, emotionally, or both) by the biggest mistake in judgement Ming will ever make. The relief that four out of the five injured are almost back to normal is immense.

Now of course the hope is that my other brother and sister in law’s daughter, whose recovery will take longer, will soon be back to normal and I have never realized before how beautiful ‘back to normal’ is, until now. She, like the other children, has a quirky sense of humour and has been heroic in wearing a head-to-hip brace for soooo long now, with style and stoicism beyond her years.

I don’t think anyone in my family has ever been through a more difficult few months. Geographical distance, misunderstandings, frayed emotions, private versus public dilemmas, forgiveness, underlying resentments, joyous reunions, hugs and recriminations, guilt, fear, love and bewilderment have all factored into the way we adults have coped in the aftermath. So the recent past has been ghastly, the present is sliding into a cushion of peace, and the future is, as it always is, uncertain.

The cushion of our visit down south is what I will rest my head on tonight because sleeping properly has been impossible for so long; my mind races back to that night constantly. Tomorrow I have decided to wake up, smile, and live again.

It is all getting better, not worse: recovery.

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