jmgoyder

wings and things

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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Nov 22

Spring cleaning

by jmgoyder

In the nearly 24 years that Anthony and I have been married, many friends and family have commented that coming into this house is like stepping into a time warp. As a newlywed, married to an older man whose mother I had cared for, I didn’t feel the need to alter anything because I already loved it here.

I don’t love it here anymore.

Well that’s what I thought the other day and the thought itself took me by surprise.Then it took me many more days to get that thought comfortable in its own words. But uttering those words took courage.

“I don’t love it here anymore, Ming.”

“Nobody comes here anymore, Mum.”

“That’s because Anthony isn’t here, Ming.”

“But WE are here, Mum!”

And so we have begun the process of spring cleaning the corners of the house that Anthony will never see again, except in his memory.

Why don’t I bring Anthony home? Because he is mostly immobile. Because it might break his heart to come home and then have to go back. Because it would confuse him terribly. Because he thinks his mother is still here. Because of ablutionary issues. Because, despite having lost so much weight, he is too heavy. Because I don’t want my already-cracked heart to shatter. Because I love Ming….

This crisis of conscious has catapulted us into re-seeing this little old house as ours or, as Ming put it, “YOURS, Mum!”

I don’t quite know why taking all of those dusty books out of the dusty book case did me in because we organised them into categories: antiques, donations, rubbish. Perhaps it was the delicate scrawly signature of my husband’s 5-year-old self inside an otherwise empty school diary dated 1941.

And then I began to cry.

“I don’t love it here anymore, Ming.”

“You will, Mum.”

Spring cleaning is not for the faint-hearted!

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Nov 20

Agog

by jmgoyder

There is something particularly endearing about Anthony on the days that he appears to be agog – his eyes wide and staring into space, or just past my left ear (because I usually sit on his right). It’s a look of such bewildered blankness that it makes my chest tighten with sympathy for whatever he is feeling behind those huge, unreadable eyes.

Today was one of those staring days in which Anthony also found it difficult to speak and mostly just uttered fractured sounds. Even when a dear friend came to visit, Anthony couldn’t quite rise to the occasion of coherent speech and did a lot of ‘d-d-d-d’-ing, finally giving up and sighing resignedly.

I remember one day, months ago, when Anthony’s speech had begun to slip and slide into slurring, he gave a little gasp of frustration with himself but still managed to get a single sentence out” “I can’t talk.” I hugged him and reassured him that it was okay because I could read his mind. This seemed to reassure him so, on days like today, I remind him of my mind-reading abilities!

It still seems like a remarkable coincidence that I would concentrate all of my energies, as a university student, so many years ago, on dementia (before it became Dementia), and well before I married the man who would one day succumb to the strangeness of this disease. The fact that there is now so much more attention paid to Dementia, and that I can be a part of raising awareness, is a wonderful thing and I am especially glad to be involved as a volunteer.

I’ve begun to write an article on Dementia care that I will be submitting to a journal that has published my work before. It’s an article that attempts to put a positive spin on Dementia and on the nursing home placement decision. I hope to interview various staff, residents, relatives and professionals from a variety of contexts and organisations – anonymously of course – in order to put together a series of personal stories that reflect the reality of this situation’s many facets.

It is now a few hours since I left the nursing home and I am, as usual, sun-downing too! Is Anthony okay? Warm enough? Too warm? Happy? Upset? Confused?

Agog?

Will he know how much I miss him?

 

 

 

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Nov 19

Come on, baby, let’s go!

by jmgoyder

The other day, Anthony was so wide awake that his eyes were huge. He has big eyes anyway but the unblinking thing that happens with Parkinson’s disease sometimes makes them look enormous.

As I tried to widen my own eyes to match his, my face nose-to-nose with his, I quipped, “What big eyes you have!” But he has long forgotten the fairy-tale response to this and, instead, he fumbled one of his hands out from beneath his knee blanket, took one of my hands, brought it up to his lips, and kissed it.

Anthony: Come on, baby, let’s go.

Me: Okay. Where are we going?

Anthony: Let’s go home.

If only……

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Nov 16

Nursing home thoughts 1

by jmgoyder

 

One of the things that I most appreciate about the nursing home where Anthony lives is the friendly kindness that so many of the staff extend to me. As I am there so much, I sometimes wonder if my presence may be inconvenient, i.e. when staff need to get Anthony ready for bed. The earlier this happens the better, I imagine, because, as each day wanes, so does Anthony’s mobility, cognition and emotional equilibrium. He can be very stiff and resistant – even when I take a jumper on or off him. Perhaps he even gets feisty but I am confident that the carers know that this is due to the confusion of dementia, and the fear – sometimes terror – that often accompanies “sundowning”.

I don’t know if the hoist still scares the hell out of him but I think it probably does and it is difficult for me not to worry. After all, he once mistook the hoist for a pirate ship and the carers for kidnappers. He still says things like:

Those kids – little bastards – attacked me again, but I fought them off.

So I say things like:

My hero!

Another thing that I appreciate about so many of the staff at the nursing home is humour. One of the carers has a kind of boppy, out-of-left-field humour. She is as quick-witted as she is quick-footed (she always seems to be running) and she can banter with Anthony, nose to nose, until he says “BOO!”

No nursing home is perfect, just as no life is perfect, and, over the nearly five years Anthony has been a resident I have only felt the need to ‘make a fuss’ a couple of times. I think that is pretty good innings actually.

The empathy expressed by so many staff to me (not necessarily in words, often in the curl of a hug, or in the blink of a wink, or in the form of the single smile exchanged in the space of my ordinary day), is my sustenance. Beautiful.

This 80-year-old demented, decrepit, frail, frowning, bony, silent, sleepy, blank-faced man (as I am sure he is often perceived) is still the love of my life.

For those funny, caring, beautiful staff, I cannot thank you enough!

 

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