jmgoyder

wings and things

Feb 17

“Look after yourself.”

by jmgoyder

I used to absolutely hate it when people said this to me. Over many years, so many people have said the following kinds of things:

You need to look after yourself, Julie!

You should get out more, Julie!

You’re exhausting yourself, Julie!

You don’t have to visit Anthony every day, Julie!

You should sell the farm, Julie!

You should smoke pot, Julie!

You need to get a life again, Julie!

This sort of well-meant advice enraged me at the time, and I resisted it, but now I am beginning to think that maybe – just maybe – it is time to make a bit of a change. A friend visited Ants the other day and, when this friend asked Anthony how I was, Anthony said, despondently, that he hadn’t seen me for days. But I had seen him the previous day! Admittedly I haven’t been into the nursing home as much as usual due to the new puppy (who, having only just been vaccinated, can’t be taken anywhere until next Friday due to the parvovirus outbreak), but it was frustrating to find out that Anthony hadn’t remembered my previous day’s visit.

And this is my dilemma: on some sensory level, Anthony notices my absence and conflates the single days I don’t visit into several days, so feels neglected. On the other hand, I might be with him day after day and he will still forget and this is a cognitive/time issue. This is an impossible conundrum that I wrestle with constantly but, due to the puppy situation, I have seen less of Anthony than usual over the last month.

The fact that, despite his now advanced Dementia, Anthony has noticed my absence, is terribly upsetting for me. On the other hand, I am beginning to realise that I actually do need to care for myself better. But I had to come to this realisation by myself and not succumb to all the ‘should’ advice.

When Ants was home and Ming was little we had an idyllic little triangle of love for each other; it was magic and it went on and on, for years and years, despite the onset of Anthony’s many illnesses (including kidney cancer in the first year of our marriage).

I will never, ever abandon him and not visit, but perhaps it really is time to re-find myself, look after myself. If I can learn how to do this better, I will be more effective in the carer support groups I am helping to facilitate.

Look after yourself.

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Feb 15

Living with and without Anthony

by jmgoyder

Six months ago I was interviewed on ABC radio about Dementia and this morning the station rang me asking if I would have another chat by phone so of course I said yes. Two hours later the phone rang and I was on the air again with Geoff Hutchison.

He introduced me by saying something like “We are talking to Julie Goyder about living with and without Anthony” and I thought this was a wonderfully simple, and yet profound, way of describing the situation.

When someone you love is admitted into a nursing home, especially if she or he is your spouse, the mutual loss can be heart-breaking and often entails feelings of guilt, fear and uncertainty. The intensity of these emotions (for me, at least) lessens over time, then sometimes erupts into the kind of depressive episode that overwhelmed me recently. For some reason, the phrase “living with and without Anthony” really got to me because that’s exactly how it is – a sort of limbo.

Nevertheless, I no longer see the fact that Anthony is in a nursing home as a tragedy. After we both accepted that this was how it had to be, it has been wonderful to see how well-cared for he is (and certainly better-groomed than he was at home!) And, as I’ve said before, not having to care for him has reignited by ability to care about him. We can eat, drink and be merry as long as I don’t have to take him to the toilet ha!

In helping to facilitate a couple of carer support groups lately, one thing comes across loud and clear. The carers – both those who look after their loved ones at home and those whose loved ones are now in permanent care – are suffering. Some of these carers are elderly themselves so the physical, emotional and psychological toll on them is massive, especially if their loved one has Dementia.

The projected statistics and associated costs of Dementia are alarming; so too are the repercussions on that burgeoning group of people who care for family members with Dementia. In recent times, more attention has been given to these carers but there is no easy solution and many carers are reluctant to seek help anyway. Why? Because it is embarrassing to ask for help, embarrassing to admit you aren’t coping, embarrassing to be confused by your loved one’s behaviour etc. And then there’s the shame. I remember when we had to make a fairly quick decision to accept Anthony’s respite room in the nursing home permanently. Anthony’s Dementia was in its early stages then so he knew what was going on and he felt abandoned, but he still agreed. My sense of shame lasted two years.

I wish I could convince others that placing someone you love in a nursing home is NOT something to be ashamed about; that admitting that you are not coping is NOT embarrassing – it’s the truth; that succumbing to Depression is NOT unusual if you are caring for someone with Dementia. There are some desperate stories out there (one caller to the radio station outlined her own experience this morning).

Living with and without Anthony is just the way it is; it’s difficult but it’s do-able. And so many of us do it silently. I choose to share my thoughts rather loudly here on the blog because there is a Dementia crisis that needs attention.

After I tried, ungently, to reposition Anthony in his armchair the other day, this was our conversation:

Anthony: Have you ever heard of the word, ‘fear’?

Julie: What? Am I supposed to be in fear of you?

Anthony: I won’t enlarge on that.

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Feb 14

Dementia and Depression

by jmgoyder

The title of this post is a bit misleading (intentionally) because it implies that Depression is an off-shoot of Dementia and, yes, sometimes this is the case.

Anthony, who recently turned 81, has Parkinson’s Disease Dementia but, even after having been in the high-care section of a nursing home for five years, he is rarely depressed.

Julie (that’s me), who recently turned 58, has Depression in the clinical sense – i.e. she has a disease in much the same way that Anthony has a disease. But, like Anthony, she is rarely depressed. There is a rather wonderful irony here.

I am not quite sure why I wrote the above paragraph in the third person except for the fact that I have been so deeply embarrassed by my diagnosis for so many years now that I find it difficult to admit. Admitting it now is my way of combatting the stigma that still exists, and rejoicing in the fact that there are treatments; that I have been helped by these treatments (medicinal and psychological); and that I have become sensitive to others who suffer like I used to.

In recent weeks I have had the most ghastly outbreak of Depression and yet, paradoxically, I have been able to function normally whilst visiting Anthony, looking after the new puppy, and interacting with friends and family. Ming is, of course, my priority, my favourite person, my rock but also, perhaps, my downfall in the sense that I feel I have failed him in so many ways.

There is a huge difference between Depression and being depressed; the former is a condition and the latter is a temporary mood. Obviously this is up for debate and I would appreciate feedback.

Dementia, on the other hand is, at least for Anthony, irreversible and ongoing/worsening. And yet he has the most amazing ability to comfort me, and to be so accepting when I leave him to ‘go to work’ (my latest ruse).

Me: I have to go to work. Will you be okay?

Anthony: Well, I’ll have to be, won’t I.

Me: So what would you rather have – me here with you or me making money?

Anthony: The money.

This has been a bit difficult to write so thanks for listening x

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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 8

The Anthony story: (notes on writing)

by jmgoyder

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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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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Jan 1

A back-stepping narrative

by jmgoyder

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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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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