jmgoyder

wings and things

Another psychotic episode?

It is nearly 9.30pm here and I just got a phone-call from the nurse-in-charge at the nursing home who wanted me to calm Anthony down because he had, once again, become aggressive and was very confused. Ming and I tried, on the phone, to talk him into going to bed but he just kept ranting and mumbling incoherently and Ming gave up. I then tried, over and over, to convince him that nobody was trying to hurt him and that the staff just wanted to put him to bed, but it became impossible, so I hung up and rang the nurse back and she said she’d never seen him like this (she is his favourite nurse).

I asked if I should come in but she said no and not to stress and they would sit him down in the foyer (where he was apparently standing and yelling) and wait for him to become too tired to resist going to bed. When I apologized to her, she was so reassuring that it would all be okay that I nearly burst into tears, and, when I said “I can’t bear it for him that he is becoming so distressed so often”, she said something comforting about how she and the staff knew him, and knew that this was different behaviour, and that they were sad too.

Once I’d hung up the phone, I marvelled that I had taken Anthony to a special friend’s 80th birthday party today and he/we had had a great time, despite him being in a wheelchair and not quite ‘with it’. In her speech, the birthday girl even thanked Ants for coming to the party and that really touched me (she and my ma have been friends forever).

It has been suggested to me that taking Anthony out might not be a good idea because, when I take him back to the nursing home, he seems more confused and exhausted than before, and he is, quite obviously, becoming a difficult patient/resident. But, what the hell – I WILL continue to take him out, and bring him home, because I love him and miss him and I want to hold his hand. (I have always found couples that constantly hold hands slightly nauseating – ha – but now I don’t!)

PS. If anyone calls me wonderful or amazing I will bop them! This is just how it is – how it is.

Anthony listening to speech

This photo is of Ants three years ago, on his 75th birthday. He turns 78 in a few weeks – quite a survivor!

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Like father like son!

Today was very interesting – and hot! Ming and I had to go into town to do last-minute jobs in preparation for his birthday party. We had to collect hire chairs, pay in advance for delivery of pizzas, buy a new cord for Anthony’s old stereo, and numerous other jobs.

I was the driver and we were using the old ute (truck), but I was also the lifter of anything heavy (like 24-packs of bottled water, coke, beer etc.) It must have seemed a bit odd that the young, robust-looking boy-man chatted happily with various store owners while the disheveled, perspiring mother did all the lifting and driving. Occasionally I would say, “He’s just had a back operation. I’m not usually his slave.”

Once we had done all of these jobs and were on our way to see Anthony, I told Ming how much he reminded me of Anthony when he was younger. Well the conversation didn’t start all that pleasantly:

Me: Why the hell did it take you 45 minutes to pay for the pizzas? Do you know how hot it is sitting out here in this crappy old ute in the full sun, waiting?

Ming: Oh! Sorry, Mum, I was just having a chat. It’s a family-owned business and they were great people. Both their kids work for them. I’m so glad we’re getting the pizzas from here and they gave me a fantastic discount and free delivery!

Me: Okay.

Ming: What’s wrong?

Me: Oh I cannot believe how much you are like Ants! Everywhere we ever went way back when he was young and fit, he would leave me in the car, go into a shop to buy something simple like a screwdriver and not come out for ages and ages. I would become absolutely furious with having to wait so long and would eventually stomp into the shop to find him talking up a storm with the proprietor, other staff, random customers, with everyone laughing and joking, with Anthony the loudest of all. He’d spot my scowling face and yell out, “Jules! Come and meet ….” and I would smooth my face back into a smile and join the ‘party’.

Ming: Do I do that?

Me: Well, yes. I mean you haven’t yet transformed a screwdriver purchase into a party but you certainly do know how to turn the mundane errands into social occasions. You also have a very loud presence.

Ming: So I’m like Dad was before I was born?

Me: Yes.

Ming: That’s great!

Finally, after all the jobs were done, and the ute was loaded up with chairs, drinks and other odds and ends, we went to the nursing home. I had asked Ming to help me explain to Ants that last night’s incident might be due to the paranoia which comes with Parkinson’s disease (he doesn’t know he has the dementia part). Our main task was to reassure Ants.

As we entered the nursing home there was a little flurry – the nursing manager pulled me aside and asked me about last night, a nurse going off duty told me she had tried to ring me this morning to say Ants was fine now, the nurse in charge for the afternoon and evening thought it might have been due to a new staff member last night. She even felt his antagonism might have been justified in some way and not just due to paranoia. Apparently Anthony had made the nursing home headlines in terms of drama!

All of these rushed conversations happened out of Anthony’s earshot of course and, meanwhile, Ming had already gone into Anthony’s room. Once I entered, Ming said, “Okay, Mum close the door so we can have a family conference.” Then we all sat close to each other and, after I kissed Anthony’s bleak-looking face and saw the anger in his eyes, Ming and I began to explain about paranoia and that if it happens again to remember that is is part of PD. I was so proud of Ming.

Ming: Dad, if you get like that again, really scared, you have to trust us on the phone because we don’t lie to you. The nurses were just trying to put you to bed and give you a pill.

Me: Ants, you were shouting at everyone, even me, that we were bitches.

Anthony: Well you are.

Me: Why me?

Anthony: You should have come in to help me.

Me: No Ants – I am not going to come all the way in here from the farm late at night just because you didn’t see me that day. How do you NOT know how much I love you? I was so worried last night and you made me cry!

Ming: Shut up, Mum, he doesn’t need to hear that. Dad, listen to me – you can’t go around calling nurses bitches okay!

Anthony: Why not? They took me to another town and then wouldn’t help me and someone is trying to get my money.

Ming: Dad, you are imagining some of this stuff because of the Parkinson’s.

Me: You know how you get those hallucinations and if I tell you it’s because of the Parkinson’s, you can cope?

Anthony: Yes.

Me: Well, I’ve been doing some research and paranoia is also part of Parkinson’s so, late at night, when the nurses are putting you to bed, you might think they aren’t nurses. Is that what happens?

Anthony: Yes.

Ming: So, Dad, you need to always remember that they are nurses and they are looking after you. If they ring us and we talk to you at night, you HAVE to trust us, okay?

Anthony: What about the bitches?

Ming: I know – they’re everywhere.

Me: He’s kidding, Ants!

The conversation was much longer and more convoluted than this, but Ming and I ended up laughing when we were able to tease a half smile into Anthony’s face. This was after he whispered to his father to swear in his head and not with his mouth.

I think next time I get a phone-call from the nursing home like last night’s I will hand it over to Ming. They are so uncannily alike!

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I think one of the best things about our three-way relationship – father, mother, son – is the soft-slicing honesty with which we have always communicated with each other. In this we are very very fortunate.

Oh yes, and the other interesting thing is that Anthony’s own father died when Ants was around Ming’s age and I remember Anthony telling me about how his dad was a lot of hard work beforehand, and that they clashed a lot. Ming clashes with Ants a lot too but today he broke the record in terms of compassion and, even if we get another alarming phone-call from the nursing home tonight, we will all be okay – all three of us.

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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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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.

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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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Christmas day with my husband, son and mother.

Ants, Ming, Meg and me.

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Thanks, Ma, for providing the turkey and the massive pavlova, and enabling us all to have a very cruisy day. Thanks, weather, for not being too hot. Thanks, God, for making today’s church service interesting and down-to-earth. Thanks, Anthony, for squeezing my hand on our way back to the nursing home and wiping my unexpected tears. Thanks, Ming, for being almost okay post-op. and for your humour. Thanks, extended family, for our wonderful night at Meg’s at Christmas Eve, my niece and husband’s homecoming, my brother’s homecoming (just last night!) Oh the list is getting too long so … to be continued ha!

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What to do if your computer overheats.

In the southwest of Western Australia we are experiencing a heat wave and, at 7.30pm the thermometer in the kitchen is nudging 38 degrees C to over 40 and apparently tomorrow will be even hotter. Oh that’s great – the air conditioner in the car stopped working a week ago and I have to take Ming up to Perth tomorrow for his surgery on Tuesday. I am going to be so worried about the animals in this heat (yes I’m just a tad worried for Ming too). Ming suggested he drive himself up for the surgery (that’s how nonchalant about it he is) and I have to admit I was a bit tempted but no, of course not.

So we are booked in to a hotel within walking distance from the hospital so that we can have a ‘night before’ get together with friends, a good sleep, then walk up to the hospital at 6am on Tuesday. Ming spent a couple of hours with Anthony at the nursing home today and we got Ants home yesterday for the afternoon so I am hoping he will remember what is happening and why I am not visiting. I will ring him of course but that is problematic in itself because he is often unable to remember how to answer the phone. But Ants hugged us both and wished Ming luck and said he would understand if I didn’t see him for a few days.

Oh, that’s right – this is about what to do if your computer overheats.

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Put a frozen package of something or other under it and it will gasp with relief!

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