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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The Anthony story: (notes on writing)

Of course I don’t want to call this book The Anthony story (boring title!) but it’s a working title for the moment and allows me to quickly reference posts that are about Anthony’s PDD. I did this way back with the Love story posts and, more recently with the Dementia dialogues posts but unfortunately I keep giving up on my writing goals.

I really want to write something that makes a positive difference to the lives of people with Dementia and those who care for them (friends, family, staff).

Of course Anthony’s story is already written on my blog, in an intermittent way, over the last five years or so. I think, if I were to do nothing else but rewrite/edit this story, it would only take a few weeks. But I keep hesitating, hibernating, hiding….

I’m not quite sure why I have such a sense of fear in writing this story. Perhaps it’s to do with my self-consciousness about the fact that this story is actually about me more than about Anthony. Yes, I think that’s it! After all, Anthony is mostly content whereas I am sometimes a mess.

Those of us who care for a loved one, either at home, or in a nursing home, are probably the most unnoticed group out there. Red Cross, Bethanie and Alzheimer’s Australia groups have now begun to acknowledge and support this growing group of people and I feel so glad to be part of this.

Me: I am writing a book about you, Ants.

Anthony: No, don’t do that, Jules.

Me: Why?

Anthony: You talk too much.

New title of book – Dementia adventures?

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The Anthony story: Chapter 1.1

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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The Anthony story: Chapter 1

Having decided to write a book about my husband’s Parkinson’s disease dementia (PDD) and how our son and I have dealt with Anthony’s condition, I reluctantly went back to blog entries.

My reluctance was only due to the fact that we are now coping well, so I didn’t particularly want to re-visit the traumas of Anthony’s escalating disease, his admission to the nursing home, and the hearbreaks of that era.

Nevertheless, I did go back in time, via my blog, to discover that during the December of 2011, Anthony was in a Perth hospital for the third time, with a specialist trying to get his PD medications ‘right’. Not long after he came home, he had what I now know was a TIA (a mini-stroke) and I called the ambulance. The hospital experience was frightening as Anthony became totally disorientated.

As Ming was due for major spinal surgery for scoliosis in early February, we gratefully accepted the respite room, at a local nursing home, for Anthony from the 4th January, 2012. This was a godsend as I knew I could no longer leave Ants alone on the farm and I needed to be in Perth to look after Ming post-op.

On January 24, 2012, Anthony’s respite room became available permanently and we had a week to make that decision. Even thought it was a mutual decision, between Ming, Anthony and me, and we all agreed, the pain of this decision was ghastly and, for me particularly, agonising.

I wish that I had known then what I know now, about how to make this experience better. Back then, Anthony wasn’t as confused as he is now with Dementia, so he must have felt abandoned regardless of how many hugs and words of comfort I gave him.

Today, he removed my hand from inside his and carefully placed it on his table.

“Why did you discard my hand, Ants?” I asked

“I thought it might need a rest, Jules.”

 

 

 

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A back-stepping narrative

It is the first day of another new year and I have made the decision to use this blog as a test-run for a book about the personal journey Anthony and I are still experiencing with PDD (Parkinson’s disease dementia). Having printed out thousands and thousand of pages of blog writings (over five years!) my initial idea was to go back to the beginning but, at the moment, this is too bittersweet and the nostalgia of ‘wings and things’ is ironic as most of our winged creatures have been re-homed. I think this is significant in our journey but I am not sure how yet. I guess, in losing those winged creatures, I have learned how to deal with loss, and sometimes with death.

To write a book about PDD, with a specific focus on Dementia, seems ambitious, but I really want to do this in order to demystify this mysterious disease. Another reason to write a book like this is to demystify the nursing home experience and to honour the carers.

When I left Ants today to come home, he tried to get up from his armchair several times, so I explained to him again and again that I had to go to work. He wanted to accompany me and kept saying “I don’t understand what’s going on, Jules.”

To leave him like that is ghastly and I worry of course. But I know he is in good hands and I know that tomorrow he will be fine again and happy to see me.

Happy New Year!

 

 

 

 

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Resting

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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Dementia dilemmas

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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Dementia dialogues 12

Anthony: How do you always find me? It’s remarkable!

Me: I have a really good map, and a really good memory.

Anthony: You look beautiful.

Me: Wow, thanks, Ants! You look good too.

Anthony: I need to get rid of this moustache.

Me: What? You don’t have a moustache, Ants – you haven’t had a moustache for years.

Anthony: So what do I have?

Me: Well, you have a lack of moustache I guess….

Anthony: Mmm.

Me: Could we resume this discussion tomorrow?

Anthony: Yes, just bring chocolate.

 

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Green juice adventures

I am a lover of green juice – a devotee, a fan, an advocate! The idea of green juice is what wakes me up in the morning, what keeps me going during the day and what EXHAUSTS me in the afternoon/early evening. Why the latter? Because I make it myself.

Let me explain the process in detail. I’ll even include a timeline.

3pm: Go out to your luscious vegetable garden and try to ignore the 35 degree heat.

3.05pm: Go back to the house to get a hat, a sweat band, and a container into which you can place your freshly harvested greens, and try to ignore the flies in your nostrils, the ants between your toes, and the possibility of a snake in your vegetable forest.

3.10pm: Once you have found your garden scissors (this may take awhile, so try to remember to remind yourself to always put them in the same place so that you don’t have to dig the entire garden up looking for them), begin to harvest your amazing produce.

3.30pm: Try not be too alarmed by the fact that all of your spinach and all of your celery plants have somehow become trees. This is because you haven’t been out to the garden for some time, but don’t feel guilty; after all, it’s hot, dirty and insecty out there. Just cut a few branches off the spinach and celery trees.

4.15pm: Take your container of beautiful green vegetables to the wash house and plunge them into a sink of cold water. If they won’t all fit, take some of the smaller greens into the kitchen and do the same. Have a little rest.

4.30pm: Cut up some apples and carrots and a bit of ginger. Put these into a big bowl with the washed greens from the kitchen sink. Make sure your wonderful cold press juicer is responding to electricity and BEGIN juicing!

5pm: Don’t be upset if you forgot to change out of your white shirt; green is a lovely colour!

5.05pm: Pour the results of this exciting process into the bottles you have waiting-and-ready for the wonderfulness of this green juice and put them straight into the refrigerator. Try not to think about the recent theory that if you don’t drink freshly pressed juice immediately, it won’t ‘work’. Allow yourself a few sips of the elixir and feel the surge of energy this provides you with. You will need this energy because now you have to clean the juicer.

6pm: Now that you have washed and rinsed the many parts of the amazing juicer you bought online, have a little rest again. You may indulge in a little green juice (delicious!)

6.30pm: If you are struggling to reassemble the juicer for tomorrow, you may open a bottle of wine. A single glass of this kind of juice can help immensely as you perform this semi-final task. Try not to panic if the top bit doesn’t quite screw into the middle bit of the bottom bit of the juicer. Instead, use this experience as a kind of meditation. If moments become minutes and minutes become, well, hours, you can either call on someone to help you, or just do that whole breathing thing until the juicer is ready for use again. Do NOT swear at the various parts of the juicer that won’t cooperate immediately; do NOT send an angry email to the manufacturers (because they did their very best and, after all, this is a very superior juicer); and, above all, do not give up on loving the green juice!

7pm: The last stage of this green juice adventure is the most challenging; force your son and husband to drink it. If your son says that there is a bit of grit in it, just smile calmly; if your husband spits it out, try not to be offended. You did your best.

And all of that leftover green juice is yours!

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How to have an amazing conversation with your 22-year-old son.

Listen.

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