jmgoyder

wings and things

A new phase

I think Anthony has entered a new phase of Parkinson’s Disease just in the last week or so. Taking him for drives, or home for the morning or afternoon, or out to lunch, or to visit friends/family has all-of-a-sudden, it seems, become something we don’t do any more.

This new phase is partly due to a deterioration in Anthony’s physical mobility, and his current sleepiness. The transition from Anthony and Julie gallivanting off for the day to Anthony and Julie sitting in his room at the nursing home, watching re-runs of Master Chef, has been strangely enjoyable for me.

Today I had to take Ming to town to get the bus to Perth at 8.45am so I thought I may as well go straight to the nursing home and spend the day there. After seeing Ming off, I found myself in an I-can’t-wait-to-see-Anthony-mood (a mood that is capturing me more and more).

So, for the first time ever, I spent the entire day at the nursing home (from 9am – 4pm). Partly, I did this as an experiment to see if I could cope. But my other reason was to see if Anthony would like me being with him in the nursing home rather than going out; he did! I will now plan all of my writing etc. to be done in the nursing home.

I’m not blogging as consistently as before – hope to catch up soon with blog friends.

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Resting

I’ve had a wonderful rest from blogging (as in NOT reading, writing, commenting, replying) and, despite the inevitable guilt, it has been great to concentrate on other things.

Like my navel!

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That’s Gutsy9 by the way.

Life here has become too busy to sustain blogging every day so I’ve decided to post once a week instead of once a day. Again, I really appreciate the support and friendships formed with other bloggers but I simply can’t keep up.

I think, too, I have oversubscribed to blogs in general and, especially to those that deal with grief. The kinship and support exchanged with those bloggers continues to sustain me but also makes me sad. I can hardly cope with my own sorrow about Anthony, so reading about the grief of others is very hard – too hard for me at the moment. For those of you who I have become close to, we have each others’ emails so we can still keep in touch. Please feel free to email me on juligoyder@gmail.com

Years ago, when Anthony was younger and still milking his cows, he would have a mini-rest after lunch and that would sustain him for the afternoon ‘shift’. He would have a solid sleep for around ten minutes then get up again, full of energy!

The memories, all mish-mashed now into the present, are sometimes heartbreaking for me, but not for him, thank God. He is okay; my husband is okay; he is being well looked after in the nursing home; he is warm; when he is confused, the nurses reassure him. And tomorrow, I will go in and stay with him for the afternoon and ask him if it is okay if I lie on his bed while we watch TV ….

Resting.

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Holiday

Ever since I began blogging, in November, 2011 (I had to go back to find this!) I have been amazed by the generosity of strangers, the friendships formed by commonalities, and the understanding when certain bloggers, like myself, just can’t keep up with those amazing, yet tenuous, friendships.

The fact that WordPress has gone a bit AWOL in terms of this blog (yes, I have contacted the Happiness engineer people) has actually given me time to reflect on what I really want to do here, on this blog:

1. Reading: Keep in better touch with blog friends, but don’t feel guilty if you can’t.
2. Writing: KISS (keep-it-simple-stupid!) – also, keep it short.
3. Photography: Learn from others.
4. Personal: If you are having a difficult time with the whole life thing, and you can’t blog, that is absolutely fine.

I so appreciate all of the blog support I have received from friends, relatives, bloggers and family, but I just cannot keep up at the moment and feeling bad not to have even answered comments! So yet another blog break is in order, so I can spend more time with Anthony and write my soon-to-be famous novel ha!

Nothing dramatic – just a little blog holiday.

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A bit like the weather

At the nursing home, Anthony was up and about this afternoon at about the same time he was in bed yesterday. He was lucid, mobile, vocal and quite jaunty.

To me, Dementia resembles the unpredictability of the weather, about which you can do nothing. The other day, a tree was uprooted and fell down during a storm; the next day it poured with rain; the next day it was bright sunshine; and today it is a bit of both.

There is nothing anyone can do about weather fluctuations – nothing. Forecasts can be wrong and often the weather will change drastically from what was expected to something totally different. A storm may shove a sunny day aside and vice versa. And there is nothing you can do about it. Nothing.

Dementia is like this in so many ways. One day, at exactly 10am, Anthony might be able to answer the phone and have a coherent conversation with me; the next day he might be unable to do either. Despite the careful timing of his PDD medications (just like I used to do at home), sometimes he has a huge appetite and other times he has forgotten how to eat. Sometimes he can almost run, using his walker and other times he can’t even take a single step and we have to get the wheelchair.

With over ten years of nursing experience up my sleeve, and a PhD about Alzheimer’s Disease, you would think that I’d have more understanding of the kind of nuances that occur when Dementia has climbed onto the back of another disease like Anthony’s Parkinson’s. And yet, every day is a surprise for me – sometime wonderful, sometimes awful, and sometimes in-between … a bit like the weather.

So what do you do when the weather isn’t what you expected?
You accept it of course, because you have no choice.

[Note to blogger friends: I am still not receiving email notifications of your posts so have been using the WP Reader. This is a much better way for me for the time being but I am not keeping up with you all and I apologize].

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Parkinson’s Disease Dementia and FEAR

I don’t think many people recognize, and acknowledge, the kind of fear that a person with any kind of dementia can experience. Anthony has PDD but can still vocalize his fears, especially after the sun goes down (Sundowner’s syndrome).

About 15 minutes ago, I rang him on his new phone and he actually picked up (doesn’t always remember how) and he was frightened and utterly delusional, thinking that he was at his brother’s house and that a storm had destroyed it, and asking me to come and rescue him. His words were garbled and frantic. I tried to calm him down, then told him I would ring the nurse but he said I wouldn’t be able to get hold of a nurse because of all the workmen were around and it was dangerous.

So then I rang the nurse and told her and she said she would go and check on him and get back to me. There is now an anti-anxiety drug that has been prescribed for these occasions so I reminded her of that.

Now I am waiting for her phone-call. As I wait, I think, with great distress, about how, from time to time, Anthony becomes absolutely terrified at night. PDD and, paradoxically, some of the medications used to treat it, can cause hallucinations, paranoia, confusion of space and time, and fear.

Anthony’s bouts of terror usually only last about half an hour which is the same amount of time it would take me to drive into town and ‘rescue’ him.

When is scared like this, he becomes more articulate despite the fact that what he describes isn’t real. Very soon, I think, he will not be able to talk at all, so it is very important for me that I understand his fear, and try to reassure him. I was in this afternoon, seeing him, and there was no indication he might have one of these ‘episodes’ despite the fact that he was very confused.

I am not just spilling my guts here – I am also saying that if your loved one has dementia but has ceased to speak, they might have the FEAR thing too so your voice on a phone, your visit, your touch, a hug, a cake, a blanket or a cup of tea might just alleviate that.

My heart breaks for those suffering this kind of fear in silence. I just spoke to the nurse and Anthony is apparently okay again and he is being put to bed but what if he is still really afraid? I am so worried, but I won’t be able to see Ants until tomorrow morning by which time he may have forgotten the fear. Oh I hope so.

He is, and always will be, my hero.

[ps. not keeping up with other blogs atm – sorry]

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Blog email notification mystery

For some reason I am no longer receiving any blog notifications via email. This means that I will need to go to the Reader to catch up I think. Have any other bloggers been encountering this problem? In the meantime, it is going to take me awhile to catch up on blog friends’ posts.

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Sweet and Sour

I don’t like sweets, desserts, chocolates, lollies, and would much rather have cheese and crackers.

This morning, Ming and I went into town to pick up Anthony for a doctor’s appointment for both of them (I am the mere chauffeur – ha!). Ants needed one of his skin cancers burned off with the liquid nitrogen spray thingy, and Ming needed a new prescription for something.

Tonight, when I rang Ants to say goodnight (this only seems to work every few days), a nurse answered and immediately handed the new telephone receiver to him.

I said I was just ringing to say goodnight and he said that this was very sweet of me and, after we hung up, I remembered how, initially (when he was 41 and I was 17), he was so horrible to me but, occasionally said things like “Jules, you are so sweet!”

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“I heard it on the news.”

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I was a little taken aback today, when I went up to our little local shop to get bread, and the proprietor said how glad she was about Ming. Seeing my confusion, she said, “I heard it on the news.” I told her about the reduced charges and she said she already knew which was quite disconcerting because we didn’t hear or see anything on the news. Then she said she was annoyed that they didn’t pronounce his name correctly and I laughed because how does anyone who isn’t Scottish get ‘Ming’ out of ‘Menzies’?

Ming and I are glad we didn’t see or hear his verdict on the news although I am now wondering who did. Oh well, I’m sure small town chitchat will only give it 24 hours and will mostly be positive and there is no point wondering. I suddenly realized I have been hiding away a bit by not frequenting the local shop, butcher, post office and petrol station as much as usual. It became a little nerve-wracking after the accident because I was never sure if people would ask me questions or avoid the subject (strangely similar to how people are not sure whether or not to ask about Anthony).

Stigma, embarrassment, acceptance, humility, guilt, miscommunication, shame, empathy, bewilderment, grief and joy; all of these factors and emotions and more have bundled themselves together, over so many months now, that it is difficult to know how to untangle what has become a maze that I have found the exit to. And yet, on opening the exit door, nothing looks particularly different; the grass is still brown from a long, hot summer, the mice and rabbits continue to plague us, the car needs washing, and I am very behind with the house-hold jobs.

I never experienced any sort of anticlimax as each of the children recovered from their injuries; it was just pure joy. And yet now that the court case against Ming is over, the joy of Monday has been replaced with a sense of nothingness which is, I guess, the space of anticlimax that precedes exiting the maze.

Tomorrow, I will exit the maze, having spent one final day within its mystery. I didn’t want to stay there but I had to figure a few things out like how to cope with people’s concern or lack of, how to move on with the newfound grace, faith and compassion I am already experiencing and how to be more grateful for every single moment of every single day, and every single person – especially my brothers’ families and my mother.

Tomorrow, if someone else says, “I heard it on the news,” I will allow my soul to smile as I leave the maze.

Happy Easter.

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Dancing

The following poem was written by my mother, Meg, before any of us knew the outcome of Ming’s court hearing on Monday. I thought she’d written it for Ming and that he was the gymnast, then I thought it might be for me because my hope was faltering; then I thought it might be for Anthony whose mobility is deteriorating; then I thought it might be for the various family members who have been affected by the car accident; then I thought it might be for all of us – everyone….

I now think Meg’s poem was all of those things, but it was mainly for our big, loud, dancing Ming!

Focus. Meg. April 14, 2014

A gymnast
On the balance board
Looks steadfastly
Towards that spot
Far in the distance
And his body
Perfectly in tune
Glides smoothly forward
Step by step
Unfaltering.

The tiniest distraction
Left or right
Behind ahead
Above beneath
He falls

Resolves next time he mounts the board
To fix his eyes
On One who beckons.

The board seems now so wide and safe
His toes spread out
His balance now regained
Secure.
A joyful happy jig.
The tightrope turned into a dance floor
Music
Laughter
Joy.

Thank you, Mother.

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PS. I think I need to get a new photo of Ming dancing because I am quite sure I have posted this one before; I also need to throw those obscene green shorts (that I bought Anthony for a joke over 20 years ago) in the trash. Why Ming insists on wearing them constantly is beyond my comprehension!

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Question: How many times do you begin again?

Answer: Every single day.

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Ming's Christmas present 2010 - 'Black beauty'

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Julie and Woody best

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EVERY
SINGLE
DAY

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