jmgoyder

wings and things

Parkinson’s disease and paranoia

Well I was wrong about Anthony not remembering last night’s incident. I just spoke to him on the phone earlier this morning and he said ‘they’ are doing terrible things to him and that last night he decided to fight back. “I wanted you to come in and see they are testing me.”

I tried to explain that the staff were just trying to put him to bed, but he wouldn’t accept that and so I said Ming and I would be in this afternoon. He said okay in a tired, defeated voice.

Since then I’ve been looking at various articles about Parkinson’s disease (PD) and Parkinson’s disease dementia (PDD) that discuss paranoia and psychosis in the latter stages of the disease. The fact that Anthony remembers last night, and still maintains that he is somehow under attack, indicates that paranoia has well and truly landed on our doorstep.

In the literature about PD that I’ve read over the years, it is stated by many that symptoms like hallucinations and paranoia are not only symptoms of the disease but may also be side-effects of the medications. What a dilemma! Ants has had hallucinations for years and lately I have noticed them getting worse (not in a disturbing way – it’s usually just dogs in the room) but in terms of frequency.

The increase in hallucinations exacerbates the paranoia because if Anthony thinks a tablecloth is his dessert, or that a dog is sitting on top of his television, or that Ming is sitting in an empty chair, or that a spoon is a lizard or that the polka-dots on my shirt are flies, then it stands to reason that he might also see a nurse as a torturer. Especially if it is late in the evening and he is already tired and confused.

It probably seems harsh that I yelled at Anthony on the phone last night but I have found this to be quite effective in the past when gentle words don’t work. Cruel to be kind I guess and it kind of shocks him into a tentative acceptance of what is going on. Last night he didn’t believe me that the nurses were nurses until I yelled at him. Obviously, if I lived closer than a half hour drive I would have gone into the nursing home, and maybe I should have gone in anyway, but the nurses reassured me on the phone that Anthony had calmed down a bit, so I let them handle the situation and I hoped for the best.

In the past, it has helped Anthony a lot when I have explained the link between PD and hallucinations so this afternoon, when Ming and I see him, I am also going to tell him about how paranoia is also part of his condition. I think if he knows this it will help him cope better with the night time ritual of being put to bed by the nurses.

Time will tell.

The photo is from two years ago with ‘Doc’ (now deceased) on Anthony’s lap, and ‘Jack’ the Irish terrier we got Anthony as a surprise birthday present when he still lived here at home.

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Love story 120 – Romance

When Anthony suddenly transformed from a macho machine into a rose-buying romantic all those years ago, it was a massive shock to me. As a macho machine, he was never demonstrative or loving or generous and I was so used to this that the ‘new’ Anthony took a bit of getting used to.  In the nearly 20 years since we’ve been married he has given me the most beautiful gifts: pearls (a few strings), silver bangles (around 20), expensive perfume, a carriage clock, an Omega watch, a couple of other watches, an antique lithograph (well he had wanted this himself), my first ever electronic organizer, my first laptop, a min-tv for my office, a beautifully framed picture of me at my graduation, two antique cameo broaches and the list goes on. Most of these were surprises but over the last few years, since he became too ill with PD to drive, he would tell me to go and buy my own Christmas and birthday presents with instructions like “Go and buy yourself a nice frock” which is ludicrous of course since I haven’t worn a dress since I was around five years old so I would come home with expensive jeans or boots instead! It wasn’t as magical to have to choose my own presents but after a year or so I began to look forward to this. I would ring him from whatever shop and tell him I was trying to choose between this bangle and that bangle and he would always say, “Get the best one, Jules.” So I would!

Don’t get me wrong. When the dairy industry was thriving and I was working, we were comfortably off, but not wealthy and Anthony, having always been extremely scroogy careful with money, continued to astound me with his birthday and Christmas gifts to me. But perhaps the best and most extraordinary gift was his ability to say “I love you, Jules.” The first time he said this, a few seconds before he proposed marriage, I laughed because I thought he was joking. For him the word ‘love’ was a definite taboo and whenever I had used it on him he had shrugged and grinned, but never reciprocated. Since the first time he said these words, he has said them every single day of our marriage and they have not lost their power.

Lately, love has become the main topic of conversation for him. When I am in the nursing lodge, or he is on a visit home, or on the phone, he talks about this big love we have for each other and his eyes smile even though his mouth can’t. He loves talking about love, so much so that I sometimes say, “Yeah, okay, I get it!”

After months of rather mopey misery on his part, Anthony seems to have finally accepted what is, so when I see him, his eyes light up, and he almost yells, “Jules!” He does this on the phone too and seems to have stopped begging me for the impossible – to bring him home to stay. Our conversations are lighter. Of course the confusion and disorientation of PDD is still there but this love-talk seems to bypass that and now, when I leave the nursing lodge, I say goodbye with a smile because I know he knows that I am in love with him too.

A few years ago

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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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