jmgoyder

wings and things

Apr 25

Dementia and distress

by jmgoyder

Until recently, Anthony’s level of distress was due to an entirely rational sense of homesickness. Recently, however, it has been exacerbated by an irrational fear that I no longer love him.

Today he forgot that he saw me yesterday (it’s the first time this has happened), so he was really upset. I had to remind him about yesterday and then he was apologetic for having forgotten.

At this stage of his dementia Anthony can fluctuate between lucid and not lucid in the space of a single sentence. He frequently hallucinates various animals (usually calves), gropes for the right word constantly, and is exhibiting several behaviours that are totally out of character.

I hesitate to say this but I’m beginning to think that full-blown dementia would be better than this limboland. It’s not that any of the above shocks or upsets me too much because I nursed people with dementia for years, so I know what to expect.

The thing that is most distressing for me is Anthony’s distress and the fact that I have never ever known him to be so sad until now. And that is my sad too.

Family Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Apr 24

Grateful

by jmgoyder

When I got an email from doudou (my blog friend), I went to her blog and saw this! I’m a bit emotional at the moment so I cried and laughed at the same time.

Thank you so much, doudou, for upside-downing my frown into a great big grin.

http://doudoubirds.wordpress.com/2013/04/23/ode-to-tina/

Animal Birds blogging Family Friendship Grief Happiness Wings

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Apr 23

Telephone troubles

by jmgoyder

For some time now Anthony has had diffculty with his phone at the nursing lodge. He forgot how to use it to ring me ages ago, but now it seems he has also forgotten how to answer it.

I couldn’t get into town to see him today and I nearly went mad tonight, trying his phone. Usually I ring the nursing staff to help him answer his phone and they are wonderful, but I thought I’d give them a break tonight.

Ming and I will see Ants tomorrow and that’s great but I worry so much about Ants being cold. He feels the cold terribly and winter is approaching.

I’m having a hard time coping, so am taking a break from reading other blogs for a few days so I can figure a few things out – including Anthony’s telephone!

Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

39 Comments »
Apr 20

All alone – ahhhhhhh!

by jmgoyder

Pure bliss!

Ming has gone to Perth to watch a football game so there is nobody here to say:

What’s for dinner?
Why are you flooding the pens and wasting water on those stupid birds?
I thought we were watching a movie together 20 minutes ago!
I don’t particularly like this dinner – what is it?
What the hell are you crying for – what did I do wrong now?
Don’t touch any of my stuff!
But why do you want me to move out?
You ruined my life yesterday when you said to move out.
No, I don’t want to ring Dad again!

On the other hand….

Mum, you are like my mate.
Do you need a hug?
I’m sorry I didn’t like the dinner – I tried to!
Are you okay?
Can we have a talk about life tonight?
I wish I knew Dad when he was young.
I love you, Mum.

He is my best friend – this Ming – but it’s still rather pleasant to be Mingless for 24 hours – haha!

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

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Apr 19

Taboo

by jmgoyder

No matter how honest and revealing a person is, either face-to-face or in a blog, there are certain things that are unsayable, secret, too personal.

There have been a couple of incidents at the nursing lodge lately where Anthony has behaved in a way that is disturbingly out-of-character.

The ungentling of my gentle husband’s brain is causing him to do and say things that are horrible. Taboo.

blogging Family Friendship Grief LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia

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Apr 18

Refrain

by jmgoyder

I am so sick of saying the same thing over and over and over and over and over again.

Today, when I got Anthony home for the afternoon, he asked, for the millionth time if he could stay the night. And for the millionth time, I reminded him that he was in the high care section of the nursing lodge and needed two people to lift him etc.

He looked at me, his eyes hard, and said, “So now I know you don’t care about me anymore.”

It was too much for me to bear and I lost my temper, interrupting this regular refrain with a few minutes of hysterical rage which woke us both up and, thankfully, ended in a mutually apologetic hug.

Then the wheelchair taxi arrived to take Ants home.

Refrain.

Family Grief Marriage Parkinson's disease Parkinson's disease dementia Uncategorized

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Apr 17

Despair and toilet paper

by jmgoyder

pea 819

I got home from my mother’s place this afternoon thinking I should have stayed another night despite the care package. Then I found that Ming hadn’t eaten much and was down in the dumps. Then I tried to ring Anthony (and am still trying), to tell him I’ll see him tomorrow. Then I discovered that there was no toilet paper.

Now I don’t think the lack of toilet paper usually sends people over the edge, but I experienced 15 minutes of crushing despair until I spotted a quirky gift on my bookcase – Novelty toilet paper!

I cried half of it away but the rest will be used for usual purposes! Now I just wish I could remember who gave this TP to me.

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

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Apr 14

Millionaire’s coffee

by jmgoyder

A few years ago, before Anthony became so incapacitated with Parkinson’s disease, we used to go to a restaurant on the beachfront after every doctor’s appointment.

We went to this restaurant after his diabetes diagnosis and we ate apple pie with cream and icecream defiantly.

We went to this restaurant after his liver disease diagnosis and drank a bottle of wine defiantly.

We went to this restaurant after his prostate cancer diagnosis and ordered the banquet deal defiantly.

We went to this restaurant after his Parkinson’s disease diagnosis and decided to try the millionaire’s coffee.

Today I decided to take Ants to this restaurant (which now has new owners). It’s only a few blocks from the nursing lodge, so very convenient, but I was still really nervous because of the unpredictability of PD.

I became even more nervous when Ants had difficulty walking, with his walker thingy, to the car and getting in. But, once his uncooperative feet were in, and his seatbelt was on, I started to feel more optimistic.

And it was a success! Ants was able to use the walker to get into the restaurant and we had an ocean view, a half bottle of wine, some fantastic prawns and scallops, and some bits of conversation. His PDD kept making the conversation weird but every time he said something crazy, I just laughed and squeezed his hand and he squeezed back.

After we’d finished eating, I decided to order his favourite coffee, but the new owners of the restaurant had never heard of a millionaire’s coffee so I had to tell them how! The only trouble is that I couldn’t remember which three liqueurs went into it so I just asked them to use their imaginations.

They did a good job! Well I think they did – my head is still spinning – haha.

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

64 Comments »
Apr 11

Fixing fences

by jmgoyder

This afternoon I finally got hold of Anthony on the phone. I had tried numerous times during the day because I was worried about yesterday as a nurse had rung me in the evening to report a fall just after he got back from here.

You see, yesterday I got Ants taxied home again but earlier than usual. I wanted to see if a whole day home would work because usually it’s just for a few hours and he gets upset to have to leave so soon.

So he arrived at 11am which coincided with one of his medication times. I gave him the pill, and Ming, Ants and I sat out on the front veranda making the kind of smalltalk you make when one person can’t participate.

At around noon the drug kicked in and Ants was able to walk, with our help, into the house. We then watched a comedy on TV, and they ate pancakes with maple syrup and cream for lunch (Ming’s idea – yuck!)

By 1.30pm Ants had again become wobbly so I slowly shuffled him to the bed and he slept until 3pm. I helped him up and outside again and then Ming and I got him into the wheelchair ready for the taxi.

This might not sound like a wonderful day but it was!

But this afternoon’s conversation was a bit of a blow. When I finally resorted to ringing the nurses to help Anthony answer the phone, this is what we said to each other:

Me: Ants, I’ve been ringing you all day. Why can’t you remember how to answer the phone? I’ve been so worried about your fall.

Anthony: Well, there’s a reason for that – we don’t get along anymore.

Me: What! What are you talking about?

Anthony: The fence.

Me: Which fence?

Anthony: On farms, you know – broken fences.

Me: No, all of the fences are fixed now, Ants.

Anthony: But us – the fence I mean – it’s broken.

Me: I don’t understand what you mean!

Anthony: I’m sorry, I didn’t mean it, I was just joking. Jules, don’t cry please.

….

Okay, I got over this ghastly phonecall and we both ended up saying áll the I-love-you stuff.

I don’t think this fence can be fixed, but I guess it can be mended whenever we fall on it.

Family Grief Happiness LOVE STORY Parkinson's disease Parkinson's disease dementia Teenagers

55 Comments »
Apr 8

Mixed emotions

by jmgoyder

pea 557

When I was 12 and struggling with my all-over-the-place thoughts and feelings, and worried that I was abnormal, my mother wisely reassured me that I was simply suffering from mixed emotions and that this was normal for 12-year-olds.

At the time, I found it immensely comforting that there was a name for my ‘problem’ – mixed emotions.

Now, all these years later, it is happening again – that simultaneous sad/happy thing but of course it doesn’t sound very convincing when you decline an invitation to lunch, for instance, by saying, “I can’t today because I am sick with mixed emotions.” A migraine is a much better excuse.

Yesterday afternoon, Anthony was taxied home and the handful of friends I’d invited (he doesn’t cope well with more than a handful) all arrived with food and drinks, and I was filled with happiness. It was a delightful afternoon and resembled the hundreds of delightful afternoons when Ants was well. I used to be amazed at how Ants would never sit down, would constantly replenish half empty glasses, would shout with laughter at his own anecdotes, turn the music up and dance, bear hug me, wink at me, grin at me. The good old days.

Of course now that Ants can’t stand up easily, or wink, or grin, or shout with laughter, or dance, or hug, or even follow an anecdote, let alone tell one, it’s different. Don’t get me wrong – it was still wonderful, but when the taxi arrived to take him back, the sad kind of stole my smile, and our little crowd went from noisy to quiet.

After Ants had gone, the frivolity resumed, but at a lower key for me and, later in the evening, when everyone had gone, I felt such a surge of grief and nostalgia that I had to remind myself to breathe.

Mixed emotions.

(But at least I didn’t injure the taxi driver this time, even though he mistook me for Anthony’s daughter!)

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

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