jmgoyder

wings and things

Dementia and hallucinations

Yes, I am still working through past blog entries in order to formulate a book, but I keep getting distracted by the present.

I don’t think even the scientists know whether the hallucinations people with Dementia experience, especially those with Parkinson’s Disease Dementia, are part of the actual condition, or a side-effect of the medications.

Tractors pulling Anthony’s trees down; long-lost friends and family (some deceased) visiting; a multitude of strange children making mischief; a room full of calves and dogs; a pirate ship; the strange ‘teacher’; the terrifying kidnappers; the wondering where I am ….

….even when I am right there.

After the terrible fright of a few months ago, when I thought Anthony was going to die, he has resurrected and, in his own words, is “better now.”

This month marks five years that Anthony has been in the high care section of the nursing home. He has outlived all of his prognoses (advanced prostate cancer, advanced PD) by years; he has somehow survived liver disease and kidney cancer. The Dementia component has been there all along but has only become noticeable over the last couple of years.

Dementia is, of course, very confusing for the person who has it but it is also confusing for the person caring for the person with Dementia. Moments – even hours – of lucidity can sometimes be punctuated with such bizarre stories that the carers are at a loss as to how to respond.

Even me, who loves him so much. Even me.

Recently, I have become so tired: of pretending I have to go to work (as way of leaving); of missing him; of this never-ending grief; of wondering whether he is okay when I’m not there. I have had to let go of the latter for my own sanity but I still worry about whether he is too hot or too cold (these thermostatic problems were the bane of my life when Ants was still at home.)

And what about Ming – our now 23-year-old son? Anthony sometimes mistakes him for a nephew and doesn’t recognise him as his only child. I don’t know how this feels as Anthony always recognises me, even if he is confused.

Ming is often ‘seen’ by Anthony in the corner of his nursing home room – as a toddler – and this particular hallucination gives Anthony immense delight. So I go along with it; what else can I do?

Perhaps the trick with Dementia-induced hallucinations is to go with the flow unless the particular hallucination is troubling.

Me: Nobody is cutting your trees down, Ants!

Anthony: Yes, he is – just look!

Me: I think it might just be your imagination and the Parkinson’s Disease?

Anthony: You always say that.

Me: Do you want me to get Ming to check it out?

Anthony: He’s too little, Jules.

Me: No, he’s a man now, Ants, and he can fix everything!

It is perhaps the ongoing, repetitive loop of the same conversation that can sometimes exhaust the carer. On the other hand, it’s familiar territory and I love to insert a bit of humour into the same old conversation and can sometimes make Anthony smile by saying “Are you totally insane?”

Yeah, bleak humour can sometimes be useful when it comes to Dementia-induced hallucinations.

And I am, and will always be, grateful to Anthony for teaching me so much about this often misunderstood and complicated condition.

 

 

 

 

 

 

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Come on, baby, let’s go!

The other day, Anthony was so wide awake that his eyes were huge. He has big eyes anyway but the unblinking thing that happens with Parkinson’s disease sometimes makes them look enormous.

As I tried to widen my own eyes to match his, my face nose-to-nose with his, I quipped, “What big eyes you have!” But he has long forgotten the fairy-tale response to this and, instead, he fumbled one of his hands out from beneath his knee blanket, took one of my hands, brought it up to his lips, and kissed it.

Anthony: Come on, baby, let’s go.

Me: Okay. Where are we going?

Anthony: Let’s go home.

If only……

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Dementia dialogues 9/10

Me: How come there’s water all over the floor? Did you tip your drink out again?

Anthony: Yes, because everybody is dead.

Me: What?

Anthony: This is a funeral home.

Me: No way! This is a nursing home – remember?

Anthony: All of the kids ….

Me: Are they still bothering you?

Anthony: I had to fight one last night.

Me: Did you win?

Anthony: Half and a quarter….

Me: Good on you, Ants! They won’t be bothering you again, I’m sure.

…………..

Anthony: Well come on, Jules – let’s go.

Me: Where?

Anthony: Around the block.

Me: Which block? The farm or the nursing home?

Anthony: The rose garden.

Me: What rose garden?

Anthony: Along the driveway!

Me: It’s too rainy and cold, Ants – sorry. Maybe tomorrow?

……………

The last several weeks have been a bit of a challenge for me because my anxious/depressive tendencies roared into my brain – WHAMMO! – when I mistakenly thought Ants was on the brink of death. I don’t want the knife edge of that grief again and am hoping that I am now better prepared.

Me: I saw an advertisement on TV the other day about cremation versus burial. What do you reckon? You know what I mean? For both of us of course.

Anthony: It’s far too early to think about that.

Me: Okay, Ants.

Anthony: There’s something ….

Me: Is it to do with my exquisite face?

Anthony: I wouldn’t go that far.

Me: What?

Anthony: But it’s quite nice, I suppose.

Me: Harrumph!

 

 

 

 

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Dementia dialogues 7

Me: Why were you so horrible to me yesterday?

Anthony: Because you wouldn’t take me home to see Mum!

Me: I’m sorry, Ants – it’s just that ….

Anthony: And, by the way, Jules – Mum is not dead!

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Dementia and distress

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.

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All alone – ahhhhhhh!

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!

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Mummy!

After 3 weeks and 2 days in hospital, my mother can go home. Today! Due to the wrist and pelvic fractures, she has been allocated a 12-week care package including two nurse visits per day, gardening and cleaning, meal help, physiotherapy and rides to shops or elsewhere. I’m amazed at such a great package and it is relatively inexpensive.

In a couple of hours she’ll be home and I’m going over to stay for the first night. I’m going to cook something great while she catches up on her emails!

This has been gruelling for Meggles – horrible pain, intolerance of pain meds., nausea and dizziness, a zillion tests and x-rays, but she seemed to burst through the ghastliness a couple of days ago in her usual style – stoic, resilent, smiling.

She is still on two crutches but she’ll probably just be on one next week. My mother has guts!

64 Comments »

Millionaire’s coffee

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.

64 Comments »

I can’t wait to be 55!

For the whole of last year, I thought I was 54 and that I would turn 55 in January this year. I was really excited about turning 55 so it was a terrible disappointment to find that I was still 54 (I got the maths wrong).

So this year, now that I know I really am 54, I am counting the days before I can turn 55. As of today I have 267 days to wait and it’s hard to be patient.

I don’t want to be 55 because I have an OCD or spiritual connection to the number 55 – oh no. And I don’t want to be 55 so I can feel comfortable about going from size 12 to 14 in jeans, because I already did that this week. Turning 55 may help me to embrace the smile lines I seem to have suddenly developed, I suppose, but it’s not that either.

Okay, I will tell you why I want so much to be 55. No, wait a minute – let’s make this a guessing game. I could do with a bit of fun!

Why do I want so much to be 55? The best guess will receive a free wrinkle.

96 Comments »

Mixed emotions

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!)

65 Comments »