jmgoyder

wings and things

Mar 4

Still Anthony

by jmgoyder

One of the things I’ve been most grateful for over the last few years of Anthony’s dementia is that his personality hasn’t changed. He is still easy-going, gregarious, humorous, accepting and gentle. Like Alice in Lisa Genova’s book, Still Alice, Anthony is still Anthony.

Or he was.

The other day, about an hour before Ming and I were due to give a talk to a group of Dementia Practice students, he rang me from the nursing home to say that Anthony had broken a staff member’s hand.

What?

Apparently Anthony has been exhibiting out-of-character behaviours recently, partly due to a urinary tract infection. He is antagonistic and physically resists being put to bed etc. It is painful for me to imagine such scenes as Anthony doesn’t behave like this when I am there so this has come as a shock to Ming and to me. I also feel terrible that someone was injured.

But, picture this:

You have no idea where you are. It’s 4pm but you don’t know that. Two women in uniform approach you with a big piece of machinery [hoist].They are trying to explain something to you but you don’t understand – something about a bed. As they begin to undress you, you try to say no, that you are cold, but you can’t remember the words so you lash out. You are so terrified that the adrenaline kicks in and you fight. If you could flee, you would, but your legs won’t work. You wonder where Julie is and why she’s not there. Who are these women, with their gentle voices and strong arms and why are they putting you into the machine?

Anthony is scared.

In one of the support groups I attend, a woman recently described how her husband’s gentle personality switched overnight; he became angry, jealous and threatening. She said, “I didn’t recognise him. He was a different person.” At the time I thought how lucky we were that this hadn’t happened to Anthony.

Ming and I admitted to the Dementia Practice students that the possibility of Anthony’s personality changing was a brand new challenge. Perhaps I should visit later in the day than earlier so that I can calm Anthony down. I know I thought of this idea ages ago, for different reasons. I’ll ask the staff what they think when I go in today.

I have been preparing myself for the possibility that one day Anthony might not recognise who I am.

It never occurred to me until now that one day I might not recognise who he is.

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Feb 20

Dementia dilemmas: Silence

by jmgoyder

Anthony is gradually losing his ability to speak clearly and coherently; his voice is soft and croaky and his sentences are sometimes incoherent and don’t make sense. I have to face the fact that the ‘dementia dialogues’ that I write from time to time will no longer be possible as Anthony’s vocal and cognitive skills decline.

Of course, not being able to write our funny little conversations isn’t at all significant in the face of Anthony’s impending silence. I have to admit that I am dreading the possibility that he may stop speaking altogether, but many people with dementia do.

I will miss his one-liners, his ‘I love you too’, and even his sometimes impossible-to-interpret statements like “That’s part of its beautifulness, Jules” when he was referring to something I didn’t understand a few weeks ago.

If this anticipated silence becomes a reality, how will he and I both cope? At the moment, I can easily mind-read and interpret what he is trying to say, so I can affirm that I understand, even if he is asking me to get the cows in, find the car, book the restaurant, give Ming a paddock, cook mornay, take him to Tasmania, visit his mother ….

Over the last weeks, sentences have diminished to single words and sometimes even the single words are unrecognisable as words; sometimes these are just faint sounds. When I can’t understand what he is trying to say, I will ask him to clear his throat and repeat what he just said. Usually my lack of understanding elicits a faint smile or a slight shaking of his head as if to say he has given up and then he will lapse into sleep again.

It is hard to reconcile this diminutive, quiet man with the loud, boisterous, vociferous presence he used to be. On the other hand, Anthony still has an amazing vitality, a spark; he still has a presence. He is popular with staff and he probably has more visitors than most. When a group of us happen to converge in his nursing home room, his delight is obvious but is not necessarily vocal.

Perhaps he will never lose his ability to speak entirely, but, just in case he does, I am preparing myself for conversations that only require a ‘yes’ or a ‘no’; a shaking or nodding of the head; a squeeze of the hand; eye contact; a hug; a kiss; tears and laughter….There are lots of ways to communicate that don’t depend on speech.

Nevertheless, I already find the sound of Anthony’s silent days incredibly challenging. It’s not tragic, or particularly depressing; it’s just the way it is and might be. Yesterday and tomorrow don’t really matter when it comes to today.

So, from now on – ever single today – I will treasure every single word that Anthony is able to utter. But I will also embrace silence.

[Knowing Ants, he will probably come out with an eloquent paragraph when I am least expecting it!]

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Feb 18

Dementia and misrecognition

by jmgoyder

Ming has been the first of the two of us to be misrecognised by Anthony because Ants keeps forgetting that Ming is now a 23-year-old adult, and not the toddler he often thinks he sees in his nursing home room.

Anthony always knows me but, on the other hand sometimes, when I am sitting next to him, he will talk about Julie to me not quite realising that I am Julie.

Neither of these misrecognitions is tragic – well, they don’t need to be! After all, Anthony is not deliberately misrecognising Ming by thinking Ming is one of Anthony’s numerous nephews. Of course the first time this happened Ming was understandably annoyed and hurt but, since then, he goes with the flow and often says, in his big, booming voice, “I am your son, Dad!”

I am quite prepared for the day that Anthony might not know who I am at all; after all, I know how dementia works and how it manifests itself differently for each and every individual. Why would I be hurt by something that can’t be helped? If Anthony’s dementia worsens, which of course it will, then it may be inevitable that one day he won’t know who the hell I am. I am ready for that.

I’ve said this before but will say it again; if Anthony stops knowing who I am, it doesn’t matter because I will always know who he is. This misrecognition thing that happens with dementia doesn’t have to be seen as a tragedy; after all, the person with dementia has absolutely no intention of breaking your heart by not knowing who you are. You can still be the most trusted, and most loving person, in his/her life.

Anthony: Where is Jules?

Me: Right here, Ants.

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Feb 16

Dementia and deceit

by jmgoyder

I absolutely love the idea of fabulation (making up stories), especially in the context of Dementia. After all, if Anthony can tell me that there are calves frolicking outside the window of his nursing home room (not true), surely I, too, am allowed to fabulate. The only difference, I guess, is that I am doing it knowingly; I am lying on purpose in order to comfort him, to make him happy.

For example:

Anthony: I fixed all the fences and the trough leaks this morning.

Me: Is that why you’re so exhausted?

Anthony: Yes, and I rode the bicycle.

Me: How far?

Anthony: About 20 miles!

Me: Bloody hell, Ants, you are overdoing it!

Anthony: I know.

Me: Ming can do some of those jobs for you – he wants to.

Anthony: He’s too young, Jules.

Me: He’s 23, Ants.

Anthony: That’s someone else. Our son is too little.

Me: Well, when he grows up he wants to be just like you.

Anthony: Oh.

Me: Ants, remember that lotto ticket we bought last week?

Anthony: No.

Me: Well we won a lot of money.

Anthony: How much?

Me: Thousands! We will never have to worry about money again. Isn’t it wonderful!

Anthony: Are you sure?

Me: Absolutely, so I am going to take the money and run off to Hawaii!

Anthony: You would never leave me.

Me: Yeah, I was just kidding, Ants. So what do you want me to do with all this money?

Anthony: Put it in the freezer.

There is no bicycle, no money and very little reality to this kind of conversation but it helps! Sometimes I feel like an actor in a play where ad-libbing is the norm. My fabulatory conversations with Ants often resemble something Samuel Beckett might have written.

My attitude may seem controversial but, as a farmer, Ants has always been worried about money, so it seems logical to fabulate the idea that there is plenty. Why not? It is a comfortable lie and now he often greets me with the question of how much is in the bank account. If I told him that his pension was not quite covering his nursing home costs and that I was eating into my superannuation to survive, he would be worried.

I don’t want him to be worried and I love the way he responds to the news of our (fictitious) burgeoning bank account. I also love the way he is under the impression that he is still farming, and farming successfully.

Anthony: That was a good party.

Me: Which one?

Anthony: The wedding.

Me: Oh, yes, it was brilliant!

Sometimes I feel acutely the surreal experiences of having been privy to these fabulations that Anthony thinks have happened in reality. He doesn’t know that he has Dementia and he often doesn’t realise he is in a nursing home.

One thing that is absolutely certain in our relationship, and that is free of fabulation, is that we love each other very much.

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Jan 28

New kid on the block (and the reason I haven’t been blogging lately)

by jmgoyder

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Well, here she is – Pip – a miniature schnauzer who is just eight weeks old. Once she has had her next vaccinations, I will be able to take her with me to see Anthony and other people.

The story behind her name: years before Anthony and I were married, I lived in a little cottage a few kilometres from his farm. I was undertaking my first year of university studies and feeling, I guess, a bit isolated. I was also suffering a severe case of ongoing unrequited love for this beautiful but idiotic older man who, instead of proposing, bought me a miniature dachshund puppy that we called Pip.

That Pip was the most beautiful gift, and the best friend I had ever had until she died many years later.

I was recently reminded (via a photo) of the special bond I had with that first Pip and how her company helped me through doing all of those assignments in that small cottage all alone. I was only in my 20s then and terribly naïve; I couldn’t understand why Anthony didn’t love me back. It is only in retrospect that I realise how taboo it would have been for him, a middle-aged farmer, to contemplate a romance with me.

So, instead, he gave me Pip.

And now we have a new Pip and I am, once again, not alone.

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Jan 17

Dementia and hallucinations

by jmgoyder

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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Jan 7

The Anthony story: Chapter 1.1

by jmgoyder

ENTERING LIFE IN A NURSING HOME

I remember being absolutely terrified and, when I look back, I realise that my terror was simply a reflection of Anthony’s fear of the unknown I guess. The view from his window was, and still is, of a lawned area which I am so grateful for because now that is where he ‘sees’ people and livestock and dogs, via his hallucinations.

He had been hospitalised so many times during 2011, that it was a surprise to me that there was no television. Hospital rooms always have televisions and Anthony was used to watching the news channels. I didn’t want to leave him in such quiet emptiness so I raced down to the closest shop and bought him a television and got it working that day. I remember feeling a sense of desperate urgency that he would have something/anything to distract him from the fact that he was being left there.

January 2012: The bed looked so small, the wardrobe looked so large, the walls looked paint-chipped in places, but all in all, it was satisfactory. I can’t remember who did the admission interview and Anthony, of course, no longer remembers any of it, but at the time it seemed a terse introduction to a respite situation that, just weeks later, would become permanent.

During those interim weeks between respite and permanency, I was busy with looking after Ming in Perth, 200 kms away – his pre-operative preparations, the spinal surgery itself, and his post-operative recovery. I remember racing back and forth from the hospital in Perth to the nursing home in Bunbury and reassuring Anthony that Ming was fine. Back then, despite Anthony having very clear signs of Dementia, he understood what was going on and why he had to be in the nursing home. Nevertheless,  he argued with me that he would be fine at home on his own and I had to keep reminding him of his falls (back then I only had to turn my back for a second and I would find him toppled on the ground).

I don’t think there was any question of Anthony being permanently admitted to the nursing home at that time. Certainly there was no question that Ming’s post-operative health would be my priority. So the fact that Anthony’s nursing home room became available in a forever way was both a relief and a shock. Anthony and I had numerous discussions over the week we had to make the decision and all of those conversations are now a blur to me. But I do remember him conceding in the end; his pragmatism took over and he didn’t shed a tear as we signed the forms. I can hardly bear to think of how abandoned he must have felt, but I do remember how the hot tears burned through my body, my eyes, my skin, during that first year.

It’s so different now! The Dementia component of Anthony’s PDD has made it easier for me to convince him that all is well on the farm, to thank him for fixing the fences yesterday, to talk about the party we had last night, to ask his advice about toilet-training little Ming, to fixing pumps, how to cook his mother’s salmon mornay, or do I look better in a skirt or jeans.

Whenever you enter a virtual game, emerge from a dream, or find yourself identifying with a character in a novel, or a blog, or a movie, you are going to come face-to-face with the difference between real and unreal.

Yesterday Anthony thought he saw a close neighbour, Mick, on the lawned area outside his room. As usual I went along with this. Then, this morning, I bumped into Mick at the local shop (I hadn’t seen him for years.) Such a strange and wonderful coincidence!

Yes, Dementia has its tragic sides, of course, and every single individual’s experience of having this disease is different. I have learned how going with the flow is sometimes not enough; sometimes you just have to go with the moment-by-moment situation.

When Anthony says, “I don’t understand what’s going on, Jules” it breaks my heart. But when he says, “I’m glad we painted that wall blue” (the wall behind his television), it is the perfect opportunity for me to begin a conversation, no matter how bizarre, and we can even have a laugh.

After all, when the ‘now’ Anthony was the ‘then’ Anthony, he would never have had a wall painted blue.

 

 

 

 

 

 

 

 

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Dec 9

Resting

by jmgoyder

I decided today to take another extended blog break. Instead, I want to concentrate on getting previous posts about Anthony’s Parkinson’s disease dementia into the form of a publishable book, or, at least, a series of publishable articles.

Most bloggers can relate to the need for a rest and I have been slackening off for ages, hardly reading anybody’s posts, not responding adequately to comments etc. despite how grateful I am for feedback.

To take a break from blogging will give me a rest from a self-imposed need to share. I think the Dementia Dialogues are important and I will continue to record and write those, but not publicly until next year.

Today, after Ming voiced his typically loud philosophising in Anthony’s nursing home room, Ants whispered “I know exactly what he means” but we were unable to get him to elaborate further.

I briefly jostled with Anthony, pretending to turn our hand-holding into an arm wrestle….

Anthony: Don’t! You might hurt me.

Me: Stop being so ridiculous, Ants – you’re not that delicate!

Anthony: Yes I am.

Me: What happened to the macho machine I married?

And then, without a beat, Anthony said, “He retired”.

So, with Anthony retired, and me taking a rest from blogging, it’s now Ming’s job to keep our story going.

In the meantime, Happy Christmas!

 

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Dec 4

Dementia dilemmas

by jmgoyder

We have been lucky so far in that Anthony has not been privy to his own experience of dementia because it has been so gradual, over so many years. He is not distressed about having dementia because he doesn’t know he has it and this is a blessing. In fact, Anthony is hardly ever distressed about anything, which continues to amaze me. I reminded him yesterday that he was the best person I had ever met in my life. He liked the compliment but was a bit mystified at my rather emotional expression of such praise.

Anthony: Why?

Me: You accept the things that come your way; you don’t let the Parkinson’s disease get you down; you are calm and content; and you are so good for me!

Anthony: You’re not so bad yourself.

Me: Well thanks, but you know how I am – intense, frazzled, up and down; you are kind of like a balm!

Anthony: Well I wouldn’t go that far, Jules.

Me: I’m the one supposed to be supporting you but it is mostly you who supports me – emotionally I mean.

But this afternoon, we had a completely different kind of conversation:

Anthony: Okay, let’s go.

Me: Where?

Anthony: I want to go home to see Mum.

Me: But she isn’t there, Ants.

Anthony: Where is she?

Me [thinking oh no, I have to lie again!] She’s as J and R’s (his sister and brother-in-law, both deceased).

Anthony: Well we can go there then [trying unsuccessfully to get up out of his armchair]

Me: I think they’ve gone out for lunch.

Anthony: Well we can join them and then go to the farm.

Me [grasping for straws]: But what if the doctor comes?

Anthony: You always do this.

At this point I decided to go quiet and put the television news on in the hope of distracting Anthony away from the topics of his mother and the farm. I was holding his hand and could sense his restless distress in the way he was squeezing mine and trying to get out of his chair. It was 2.30pm, by which time Anthony’s mobility is usually shot and his lucidity faltering, so I decided to wait silently in the hope that the mother/farm conversation would be forgotten.

While I waited, I could see from the corner of my left eye that he had turned his face towards my profile, imploringly, but I just pretended to be lost in the ABC news. I ignored the wave of sorrow that suddenly washed over me and tried to get my thoughts together, just in case….

Anthony: Hey, hey [squeezing my hand harder]

Me [looking at him in mock annoyance]: What now!

Anthony [with a little smile at my retort]: I don’t understand why you don’t like Mum anymore. Why can’t I see her?

Me: Okay, Ants, I didn’t want to remind you of this because I didn’t want you to be upset but your mother died many years ago. Remember? I was with her in the hospital when she died and the funeral was in Perth where she is buried in the K cemetery.

The expression of bewilderment on his face was heart-breaking but he coped with the same kind of resigned acceptance he expressed all those decades ago when his mother did die.

Anthony: Thank you for telling me, Jules.

Me: Are you okay, Ants?

Anthony: Not really.

Me: What can I do?

Anthony: Can you just take me to the farm – my farm?

Me: Okay, now I have to tell you another upsetting thing, Ants. You are in a nursing home and I can’t lift you anymore so we can’t go back to the farm – well, not today anyway. Ming gets back from Perth tomorrow so maybe then. That way he can help me.

Anthony: You always say tomorrow.

Me: Please, Ants! I would bring you back to the farm right now if I could. I can’t lift you! I love you with all my heart but I just can’t manage you physically. That’s why you are in a nursing home!

Anthony: But I’m getting better every day. Why don’t you believe me?

Me: I do believe you – I absolutely totally believe you but you have to trust me too okay?

Anthony: Don’t cry, Jules….

It’s okay, I am not crying now but I wanted to write this situation/conversation into my blog in order to show how easily the past and present can either collide, or slip and slide in the mind of someone who has dementia. As Anthony is usually so accepting and content, I wasn’t expecting to have to negotiate my way through such a complicated conversation. I think I managed it fairly well, but I could have done better and I wrestle with that.

On the other hand, these kinds of dementia dilemmas are what so many of us face. I am so glad to be volunteering for the various organisations that focus specifically on dementia, on the carers and, vitally, those who actually have dementia – like my wonderful Anthony.

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Nov 23

Nursing home thoughts 2

by jmgoyder

I was reading a novel the other day in which a nursing home was described as a “dumping ground”. It wasn’t the author of the novel who said this; it was her prissy main character.

I felt as if I had been slapped in the face.

Nursing homes are not dumping grounds! And yet this seems to be a common misperception, often accompanied by barely disguised expressions of absolute horror.

Nursing homes are not houses of horror!

When I recently bumped into an old friend and told her that Anthony was in a nursing home, she reacted with as much distress as if I had told her he’d died.

Okay so the nursing home decision is a last resort and I well remember how the three of us (Anthony, Ming, me) struggled with that decision. It was a mutual decision, hastened by Ming being scheduled for major spinal surgery (scoliosis) on Valentine’s Day that year. I had arranged two weeks of respite accomodation for Anthony at the nursing home while Ming and I headed up to Perth. Long story short, we got back and were told we could have the nursing home room permanently.

Now that decision was horrific – not because I/we had a horror of nursing homes per se, but because of the unexpectedly quick separation. If you don’t take an available room in a nursing home, you might be waiting months if not years, so we said yes. Much of that first year of Anthony living in the nursing home is a blur to me now but my mother tells me I wore the same brown coat day after day, week after week, month after month, and cried all the time. I know I must have blogged about it but I don’t want to re-read those posts at the moment.

Neither do I want to admit the relief I felt at the time but I have to admit it now because I still feel that sense of relief every time I see Anthony. Why? Because the nursing home decision alleviated all of the physical and emotional stress and exhaustion of caring for him and gave me the freedom to care about him again.

Did I stop loving Anthony during those years before the nursing home? Of course not! Did I stop liking Anthony for wanting to go to the loo a thousand times a night? Yes!

The nursing home decision has, over time, replenished my energy, allowed me a social life with family and friends, given me time to write, enabled me to focus more on our beautiful son, and, importantly, gifted me with the ability to fall in love all over again….

With Anthony.

Nursing homes are not dumping grounds; they are, however, the most unvisited resorts in the world.

 

 

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