jmgoyder

wings and things

Having fun!

At 8pm tonight, I rang Anthony’s mobile phone and it was answered by a nurse and handed over to him. I have tried 8pm many a time (my method is to let the phone ring 11 times, hang up before it goes to the message bank, then try two more times in the same way).

Anyway, tonight I got to talk to him just as the nurses were putting him to bed. He was articulate, lucid, content and said he looked forward to seeing me tomorrow. It was such a normal conversation, he wasn’t in the least demented or delusional or distressed and his voice was so clear!

I have no idea whether he had been given what I call ‘the emergency pill’ (a sedative) or not, but it was such a relief that he was okay because I had been feeling guilty all day for not seeing him today.

The main reason I didn’t go in today was because I had a migraine. This was partly due to the relief of hearing that my niece was out of her spinal brace (extreme relief seems to trigger migraines with me), but also because it was my birthday yesterday, I’d had a fantastic lunch with my ma and Mingy.

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Then, in the evening, a heap of friends came over and it’s quite possible that I may have over-indulged in champagne and stale pizza.

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When it began to rain, we all came into the kitchen and, with the music, loud conversation, and drink-clinking, I was reminded of those long-ago days when I first met Anthony, the kitchen throbbing with life, the stereo blasting, the absolute sense of unrestricted fun.

And for a moment, I basked in the memory of my adventure into the heart of Anthony. His sense of fun was always contagious – absolutely – and now of course he can no longer be a part of this sort of frivolity because he is too sick, too incapacitated, too confused.

I think one of the main reasons I fell in love with him is because he transformed me from a shy, intense, introspective teenager into a person who had the capacity for fun! He didn’t even know it was my birthday yesterday and he thinks he has only been in the nursing home for a few weeks (it is nearly 2 years), and of course he doesn’t know we had the impromptu party last night.

More than anything in the world, I miss his loud laugh, his wild sense of fun, his gregariousness and life-of-the-partyness, his twinkling eyes when he glanced at my flustered face, his amazing hugs and huge strength of being, of character.

Anthony has given Ming and me a huge appreciation of having fun despite all of the odds, and, for this, I thank him to the sky.

Of course I also thank the fantastic friends who came over last night!

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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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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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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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I am changing my name to “Whoops”

A couple of days ago I wrote about Anthony’s 1963 stove that has recently died. My first ‘whoops’ was when I described it as being a tiny bit older than me when it is actually a tiny bit younger. I don’t feel the need to apologize to the stove since it’s dead anyway but I did want to correct that minor inaccuracy for blog posterity purposes.

My second ‘whoops’ was when one of my blog friends commented: “1963 a very good year… your stove lasted 50 years and so did our marriage.” I took this to mean that something had suddenly gone amiss with her marriage so I replied, “I’m so sorryxxx.” Then I went about my daily chores a bit sad for her.

Much later in the day, I logged on and saw that my friend had written: “What are you sorry about…… we’re still married… sorry if I confused you…” Oh, I was so relieved that her marriage was in such better shape than my stove that I laughed hysterically for a few moments, then she and I exchanged a few ‘haha’ messages.

I have done a few ‘whoopsies’ lately (I seem to have a talent for it), and some of them have gotten me into trouble, so I am beginning to realize that I need to think more carefully before I speak or write. This particular ‘whoopsie’ though was so funny that I am still laughing and laughing. I have not revealed the identity of the blogger who I ‘whoopsed’ because, well, privacy and all that, but if she is willing to comment you will all know.

I imagine she is still laughing too – argh – whoops!

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Not a one-way road

25 years ago, before Anthony and I were married, I would often travel the two hours from Perth to the farm to spend the weekend with him (he rarely took a day off). I would turn into Paradise Road – the short, narrow road leading to the farm – stop my car and quickly refresh my lipstick, powder my nose, spray the perfume he gave me onto my neck, fluff up my hair, then zoom the remaining half mile with my heart beating madly in anticipation.

I would arrive to a shout of “JULES!” the scent of a chicken roasting in the Aga, and a hug that would nearly crush me. There would be beer, maybe a visitor or two, willy wagtails flitting here and there, and the beautiful, comforting smell of cow dung in the outside air. There would be Anthony’s bellowing laughter, my latest anecdotes about university and the nursing home where I worked, a lesson in gravy making, a beautiful meal, a favourite comedy on television and lots more hugs.

We were in love.

Now, I head in the other direction up Paradise Road to go into town to pick Anthony up from the nursing home and bring him to the farm for the afternoon. Even though I retain a tiny shred of that anticipation of 25 years ago, it is tainted with a kind of exhausted dread because I know the afternoon will be difficult. There will be no bellowing laughter, very little conversation and there will be a lot of dangerous occurrences when Anthony tries to do things he can’t do anymore – like chopping wood, washing the car, mowing the lawns, fixing the gate. I will secretly (through the kitchen window) watch him try and give up, then I will watch him stand outside, swaying slightly whilst leaning on his walker, then I will ask him to come back inside. If I hover over him it makes him feel inadequate, so I don’t but as he has had so many falls, I get anxious. I watch him struggle for half an hour with things I could do in minutes (like opening a gate, washing the dishes), and I try to breathe slowly and patiently. If he begins to do something ludicrous (like wind a clock with a knife, drink from the sugar bowl, talk to people who aren’t there) I sometimes intervene and not always gently! And he has no idea how absolutely exhausting these days at home are, no idea of the guilty relief I feel when I can take him back to the nursing home, no idea of how much my heart breaks when he says, “But why can’t I just stay here with you?”

During the drive back it will be the same halting conversation:
Me: I can’t manage you at night now – you know that, Ants – you’re too heavy.
Anthony: But I’ve lost so much weight.
Me: I know but you are still too heavy and Ming isn’t supposed to lift either.
Anthony: I’m better than I was Jules.
Me: Yes, but you still have Parkinson’s disease.
Anthony: I miss you so much – please never leave me.
Me: Idiot! Of course I won’t leave you! Ever!
Anthony: That’s good then.

We are in love.

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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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When every day becomes yesterday

When Anthony was home yesterday he kept talking to the television. I would come in and out of the kitchen where he was sitting (his favourite spot) and enter an already-there conversation. I was busy with washing and other chores (something I continue to do even if Ants is home, just to keep things normal-ish), but every time I came back into the kitchen he would be talking to one of his deceased brothers, or to the now-dead stove, or to the dogs on the table (hallucinations).

Ming cannot stand it – he just can’t. He says, “Mum, I love Dad but I just can’t tolerate him!” I understand his point of view; after all, he is only 19 and his dad is nearly 78. On the shy side of 50, I am in the middle of this all the time so, when Ants comes home – and I do this as much as possible – I leave Ming with him while I go to the toilet to cry. No, not self-pity – just so hard to remember how good it once was and how bad it is now.

I miss all of our wonderful yesterdays just as much as Anthony does. But Ming doesn’t remember and he has no recollection of Anthony ever being well. Every day, lately, he has asked me for a hug and every day I have given him a hug, even after our ferocious arguments, about the car accident, about many things….

Sometimes it is hard to be positive but I have enormous faith in both Ants and Ming and I think that is reciprocated to me. I hope so.

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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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