jmgoyder

wings and things

Disorientation dilemmas

Over the last couple of weeks I have become more and more reluctant to take Anthony out of the nursing lodge to either bring him home or elsewhere, even with the use of the wheelchair taxi, because of how often these ‘outings’ sort of backfire.

One of the nurses said to me the other day that when he gets back to the nursing lodge he is often moodily unhappy and it has been suggested to me by friends, family and staff, that taking Ants out of an environment he is still adjusting to might be detrimental rather than delightful. Now, in principle, I already knew this because I spent many years working as a nurse, then undertaking a PhD about dementia and finally having a book published. Wiithin that book, I devoted a chapter to this very issue, so I do know.

Back then I was writing about a patient who always wanted desperately to go home so one day, I took him out for a walk up the street and, instead of being delighted to get away from the nursing home, he became even more disorientated and I had to bring him back much sooner than I expected. It was a humbling experience because I had thought, at the time, that I would cheer him up but that little venture out exacerbated his confusion and he was more agitated than usual for a couple of days. Yes, I felt bad but I also learned something.

That was years ago – well before Anthony and I were married. I told him the story of this man and Ants was proud of me for undertaking the thesis and he said I was too kind and I should have just left the situation alone. He said, “Jules, he needs to settle.” Ants felt so sorry for that man.

Now he is that man.

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Can dementia be a blessing in disguise?

Lately, I have caught myself (guiltily) wondering about this question and its many off-shoots. Nevertheless, it is probably a rather controversial question to ask, so I apologize if it offends anybody but I wanted to ‘put it out there’ to see what other people think.

A few weeks ago I discussed the hesitant beginnings of this question with Anthony who now knows that dementia is creeping up on him. He knows because it has been mentioned by various professionals in front of him; by me, carefully; and by Ming frankly (“Dad, you’re losing the plot!”)

PDD is an acronym for Parkinson’s Disease Dementia but this condition is not as well known as Alzheimer’s Disease despite the fact that its symptoms are so similar – ie. loss of short-term memory, loss of ability to remember how to do normal activities (walking, speaking, ablutions, eating etc.) In the final stages of Parkinson’s Disease, which is where Anthony is in this strange continuum, the dementia usually begins to kick in.

So far, the dementia has been gentle, but unpredictable and, as I said to Anthony yesterday, “Mostly you are lucid but sometimes you are gaga”, and he agreed. It reminded me of all those years ago when I was looking after his mother and her extreme distress at becoming forgetful and confused. I have never forgotten her tears that day because she was not the crying type; she was stoic. Anthony is like that too, but I have noticed that, when lucid, he is sad and, when gaga, he isn’t sad.

A few weeks ago, I wanted to find a miracle cure for the encroaching dementia but now (apart from the fact that there is no miracle cure), I wonder if the hastening of dementia would be a blessing in disguise.

I don’t know what to wish for anymore.

Any thoughts?

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Funny incidents

FUNNY INCIDENT 1

Anthony and I just had a nostalgic talk on the phone about the Captain Stirling hotel (where he thought he was last night). He remembers vividly his delusional episode which I find rather remarkable. I remind him of our stay there when I was heavily pregnant.

Me: You took me to the cheapest hotel in Perth, with a room that didn’t even have a bathroom so I had get up and go to a communal bathroom a million times during the night because of being pregnant and needing to use the loo. Your were such a tightarse!

Anthony: I thought it was quite romantic.

Me: You really ARE deluded!

Anthony: Remember bumping into Ed in the bar? [distant relation around Anthony’s age]

Me: How could I forget that! Remember how we didn’t understand why the bar was so crowded with middle-aged women?

Anthony: And Ed told us is was ‘Grab a granny night’!

Me: It was appalling! So why did you think you were there last night?

Anthony: Because it looked exactly like the Captain Stirling.

Me: So you’re okay today?

Anthony: Yes, I’m not there today.

Me: Where – at the Captain Stirling?

Anthony: Yes, I’m back here.

Me: Okay, I’ll be in later – I love you.

Anthony: [mumbles incoherently – this is happening a lot now]

Me: I can’t hear you – what did you say?

Anthony: I love you.

Me: Well it’s about time you said that!

Anthony: I couldn’t remember the words.

You gotta laugh!

FUNNY INCIDENT 2:

Ming and I have the usual mother and son conflicts and after a particularly horrible argument, which Ming later insisted on analysing every nuance of until we were reconciled (rather exhausting), we had this conversation-

Ming: Mum, I don’t want to see any of my friends for awhile.

Me: Why? What’s wrong?

Ming: Nothing. It’s just that I want to work on repairing our relationship.

Me: You really are unique, kid!

Ming: I try.

We both laugh!

FUNNY INCIDENT 3

Adolescent peacock 1 [we have too many for me to name them!]: Is Julie watching?

Adolescent peacock 2: She’s trying to take pictures you idiot! Turn around.

White adolescent peacock: I think I’ll leave you guys to it.

Angelina: Those two peacocks are getting very cocky aren’t they, Malay.

Malay: Hey, watch your language!

Tina Turner: Don’t worry, New Kid, around here this is considered normal behaviour.

New Kid: How do they do that feather thing?

Tina Turner: I don’t know and I don’t care!

Phoenix 1: Their need to flaunt themselves deeply saddens me. It’s a sign of the times. I prefer to let my beauty speak for itself.

Adolescent peacock 2: I told you to turn around. Do you think Julie wants a picture of your bum?

Adolescent peacock 1: I can’t turn around because you’re in the way. I’ll try again tomorrow – I’m exhausted.

New Kid: I’m having a bit of trouble adjusting to this place, Malay.

Malay: Don’t worry, New Kid, I was born here and I’ll look after you.

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