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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One hour

It is 8.30pm and I haven’t seen Anthony today because Ming and I have been so busy cleaning up and organizing things for his 20th birthday party on the weekend. With at least 70 people expected, I am, to say the least, a tad nervous, but they are all wonderful kids, and a few of the parents are coming too in order to help keep things on an even keel!

So it is one of the rare days I haven’t seen Anthony. I warned him of this yesterday and he was okay about it and I tried to ring him a few times today but then gave up. He has definitely forgotten how to answer his phone now and I am becoming as frustrated as the many friends and relatives who keep trying to ring him.

When the nurse rang me half an hour ago, I was shocked to hear Anthony yelling ‘you bitch’ over and over in the background and when the nurse got me on the phone to him, he yelled at me too. Ming tried to talk him through taking the sedative (only needed occasionally) to no avail, and the nurse said she would ring me later. In the background I could hear Anthony yelling “get away from me, you bitch” and “Jules! Help me!” and to Ming, “I’m being tied up, Ming!” and “You’re like the rest of them, Jules, you bitch” and “I don’t trust you, come and get me right now, Jules!”

And this went on and on over several phone-calls back and forth from staff to me. This kind of episode doesn’t happen often – maybe once a month – so last time I took Ants to our doctor, I asked for something to calm him and he prescribed it. Tonight I said to the nurse-in-charge who first rang me that there was an emergency drug for this but, during a later phonecall, I could hear Anthony yelling “No!” and the nurse told me he wouldn’t take it or go to bed.

Sobbing with anxiety, I ended up yelling at Ants on the phone to pull himself together, take the pill, go to bed, stop yelling at the nurses, and that I would see him first thing in the morning. When he didn’t calm down, I screamed at him over the phone: “Stop it, Anthony, stop it! This is not you – it is the stupid disease – I will see you TOMORROW!”

I think he finally accepted this and the nursing staff said he was calming down and they would only ring me back if things escalated again.

And tomorrow? He won’t even remember. So was/is this a psychotic episode? Hallucinations? If so, what triggered this – not seeing me today?

But he sounded so terrified, hence his uncharacteristically abusive language. Five phone-calls, five minutes x five, and five moments when I decided to stop crying and to start yelling at him.

Will he be asleep by now? I don’t know, but I am so tired and defeated and shocked now that I’ve decided not to care about it until tomorrow. Otherwise I will go mad.

It is 9.30pm.

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A peachick + a flame tree + pavlova = a great New Year’s day

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It was so funny watching the interaction between Anthony and my ever-curious little peahen, Gutsy9. But Anthony was much more interested in his glorious flame tree….

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And my mother’s pavlova!

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A tip for taking people with Parkinson’s disease out and about

As Anthony’s Parkinson’s disease (diagnosed several years ago now) has worsened, it has become increasingly difficult to take him out, or bring him home from the nursing home. For a few months last year, I relied on the wheelchair taxi because he had become so heavy to manouevre. Then, with some tweaking of his medications (by his specialists and doctors) and with a renewed sense of determination on my part, and special attention to timing, I began again to take him out by myself.

The timing of Parkinson’s disease medications is vital. If Anthony doesn’t get his 11am pill, he is paralysed by noon. The staff at the nursing home have been brilliant at getting this right. This means that if I pick him up for lunch he is able to walk (using a walker) to the car, get in with just a bit of a shove from me, get out again with a 1, 2, 3 pull up from me, walk into a cafe or whatever, eat some cake, and walk (using the walker again) back to the car.

His next scheduled pill for the day is 4pm but I really think it should be 3pm because that is the time that he always begins to falter, with his words, movements etc. so, if he is home, I give it to him early because we have had some extremely difficult situations where I just cannot get him to move his feet at all, let alone walk. I guess we are getting to the stage now where I have to bring both the walker and a wheelchair with us if we go out.

The person who most inspired me to take Anthony out more is Terry at http://terry1954.wordpress.com/

Terry has been looking after her brother, Al for years and Al doesn’t just have PD, he also has MSA (see Terry’s blog for what this is like). Al is now bedridden and on the brink of death with Terry constantly by his side. She has always inspired me in the way she copes with pragmatism and prayer in equal amounts.

But, before Al reached this stage, Terry used to to take him out and about, to his favourite shops and restaurants. I read about these escapades with mixture of delight and admiration, but what really struck me was how much joy this gave Terry herself. She is the person who gave me the impetus to take Anthony out and about more.

And, if I get the timing right, Ants and I can still have a rollicking time (well sort of!) However, here is where Terry and I are different; she took Al to places Al liked to go to (she is unselfish), whereas I now take Anthony to places I like to go (I am selfish).

However, that is my tip: instead of seeing it as a chore to take someone with PD or any other disease out of the nursing home for a bit of a break, think of where YOU would like to go. That way, the outing is transformed from a job into a joy.

Just don’t go to the beach (wheelchairs don’t do well on sand!)

This post is dedicated to Terry and Al.

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A caregiver’s perspective

The term ‘caregiver’ is relatively new to me and I am not quite comfortable with it because it has always seemed so weird when various professionals (doctors, nurses, nursing home staff, receptionists) have asked me if I am the caregiver/carer. Whenever this question was asked in front of Anthony, over the many years of his various illnesses, I always used to say, “No, I am his wife.” The caregiver/carer identity always seemed somehow insulting to him so I found it hard to accept.

I had to accept this new facet of my identity of course because eventually I had to apply for a ‘Carer’s allowance’ so I could get paid a little bit of money to make up for all the leave I was taking from my job at the university. This was because it became more and more apparent that I could not leave Anthony alone as he was prone to falling over, nobody could get the Parkinson’s medications quite right (a common dilemma), and sometimes Silver Chain staff couldn’t come when I needed to go to work. After two years of this tenuous situation it all culminated in my resignation, Anthony’s admission to a nursing home and Ming’s first scoliosis surgery.

This was around the time I began this blog and, even though I know I can go back and look at what I posted during these difficult times, I don’t want to until my own memory of putting my beautiful husband in a nursing home kicks in. Of course I remember the trauma of this happening and Ming’s impending surgery but I don’t remember a lot of what happened between then and now.

Now, I only know the joys and anxieties of each single day; today I brought Ants home for awhile, then took him to lunch at my mother’s, then took him back to the nursing home where ‘goodbye’ was fine because he knows he will see me tomorrow. Ming can’t understand why I go in almost every day now when I didn’t used to and he even gets a bit jealous, so I have to be quite careful to divide my enormous love for both of them evenly – ha!

I used to see people wheel-chairing their loved ones around supermarkets or down the street and I would think, oh how can they bear it? Maybe, when people see me (still relatively young), wheeling Ants into a cafe or shop, they think the same. I don’t know. But for the moment I actually find these outings great fun even though it probably looks like an OMG-how-ghastly-for-her situation.

Today, on the way back to the nursing home, I stopped at the grocery shop and left Ants in the car (too hard to get him out and back in again) and as I approached the car with the groceries, I saw him smile a little bit.

Once I got back into the car, I knew it would only be a few minutes before I would have to leave him at the nursing home and say goodbye and I was feeling a bit crappy until Anthony said, “You really are very beautiful, Jules.”

The caregiver/carer role can sometimes be reversed in such a way that is SMACKS you in the face and makes you glad, makes you think, makes you wonder. Thanks Ants – you made my day!

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Prayer

I am not really sure what prayer is any more, but, whatever it is, I have rediscovered it.

Earlier today I reblogged a post written for Robyn by her friend, Resa, but like many a reblog, it didn’t get read by that many people on my own blog, so I thought I would add something here to encourage people to check it out AND to check out Robyn’s own blog at:

My Story

I have known Robyn since I began blogging and was compelled by her courage in dealing with debilitating physical pain, her talent for photography and poetry, and her immediate and generous friendship to me. But a few months ago she stopped blogging and I knew things must be badly wrong, so I sent her a couple of tentative emails, worried that I might be intruding, but she replied and told me things were not so good.

Since then, I have worried and wondered and prayed and been scared for her so, it wasn’t until Resa posted about Robyn that I knew about her impending major hip surgery this week. I cannot imagine the kind of physical pain Robyn has endured over the years, but I can imagine the hope felt by Robyn, and her family and friends, that this surgery will vastly improve her condition, and that it will take away the pain.

Many people who follow this blog already know Robyn, but if you don’t, please spare a thought and a prayer for her this week. She is one of the best people I have ever been blessed to meet.

I salute you Robyn, over and over again.

This is a prayer.

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Robyn’s Poetry Shirt

For my beautiful friend, Robyn.

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Out to lunch!

Today is the fifth day I have been out to lunch with various family and friends AND had visitors in the evening. I feel thoroughly resocialized!

Yesterday was lunch at the local tavern with Ming’s best mates’ families. The day before was lunch at a restaurant with Ming, Meg and Anthony, where Anthony proved that his appetite is still quite healthy by vacuuming up two dozen oysters naturale AND a chocolate dessert (even though he had already had his usual roast dinner at the nursing home!)

And then there was lunch with with an old friend whose husband is in hospital, lunch with Tony (which I already blogged about), lunch today with Anthony’s niece who is also my niece but she is older than I am but looks younger (grrr!), then drinks here with another old friend, her husband and gorgeous daughter, then last night a rollicking time with my first niece, Ash, and her Scottish husband, who have both moved back to Australia.

Happiness can be a bit exhausting. Oh yes, and the peahens are gradually returning!

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Twenty years ago….

Twenty years, nine hours and forty seven minutes ago I gave birth to a funny, round-headed, thin-limbed creature called Ming. Happy birthday, beautiful boy-man! Anthony and I love you very much.

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How to apologize?

The reason I have added a question mark to the title of this post is because I don’t know the answer in general. I only know my own way of apologizing, which is pretty much to roll in the dirt, say I am sorry over and over, and kiss the toes of people I don’t particularly like or understand anymore, hoping for some sort of forgiveness or reconciliation.

But there is something fundamentally skewed about this kind of apology because it implies guilt (mine – i.e. it is all my fault) and it also gives the person apologized to a very good reason to keep hold of his/her grudge, whatever it is. Sometimes that grudge has nothing to do with the present but has everything to do with the past and, when the past has somehow become toxic, you know you have a problem.

Ming and I were talking about all of this philosophical stuff today, after a fantastic lunch out with Ants and Meg, and we came to the conclusion that there were three ways to apologize and forgive: (1) Blip it, move on, act normal and civil, forget the hurtful things said/felt; or (2) Talk it through, be honest even if it means tears and/or recriminations, and tell me what the hell I have done that has hurt you so much; or (3) Distance.

Give me distance any day!

Sometimes Anthony imagines or hallucinates about past family conflicts and I have to reassure him that everything is okay now. I hate that he remembers incidents that are best forgotten and I hate that he forgets all is well now.

I always want to talk through these kinds of relationship conflicts – always! I want to put it all on the table, so to speak, but I am usually on my own because nobody wants to get into the nitty gritty of what the hell is wrong here, and nobody seems to want to apologize back!

Why?

I am so sick of saying I am sorry!

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