jmgoyder

wings and things

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.

Alzheimer's Disease; Dementia Anthony blogging death and dying Embarrassing moments Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Nov 29

Green juice adventures

by jmgoyder

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!

Anthony Embarrassing moments Family food Friendship Humour joy laughter LOVE STORY Marriage Western Australia

20 Comments »
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!

 

Anthony death and dying Embarrassing moments Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Oct 30

Poetry and sentences

by jmgoyder

When a little parrot you have never seen before

trips clumsily over the fragment of a mung bean sprout

you have placed on the balcony ledge

of the resort you have brought your mother to, to celebrate her 82nd birthday,

you hold the rest of the mung bean sprout in the palm of your outstretched hand

and smile when that little parrot takes it and flies away,

its wings flapping once

like a wink.

 

That sentence was too long and I don’t know if I have punctuated it properly for poetry. But I do remember advising my creative writing students to use commas when they felt the need.

 

Ming, Meg and I spent some time together at this wonderful resort and, thanks to Wifi, my mother was able to receive the multiple birthday messages from family and friends. We all thought the little parrot would come back as it seemed so tame. Having taken multiple photos of a similarly tame-seeming kookaburra, it seemed inevitable that the little parrot would return for a photo shoot – ha.

 

I had seen Ants and fed him his lunch on the day I drove us down south to the beautiful resort. My mother and I were supposed to check in at 2pm but I was delayed because Anthony was in ‘agony’ (his unusually dramatic words, whispered to me) due to constipation. Once that the situation was remedied and he was back in his armchair and comfortable, I told him I was taking my mother out for lunch for her birthday.

Anthony: I think I might stay here.

Me: That’s fine, Ants. I’ll see you after the birthday lunch.

48 hours later, my mother and I arrived at the nursing home in time for me to feed Ants his lunch again. He didn’t appear to realise that I had been gone for longer than a day which was a blessing to me.

 

During our time at the resort, my mother and I basked in the luxury of the beautiful view, the wonderful wineries, the gift-shops where I found unusual wine glasses (my latest hobby). My mother found a fantastic onyx ring which absolutely made my day. And we walked through the rather magical gardens – just us the first time, then with Ming who came down laden with three varieties of Bailey’s Irish Cream – his birthday present for Grandma.

 

I saw the kookaburra once more, from a distance.

My mother recollected how much I cried and cried after placing Anthony in the nursing home and I admitted that I didn’t remember this phase. I know I can look back on my blog and re-see that pain but I don’t want to because it is all fine now; Anthony, Ming and I have accepted that it is what it is….

Happy birthday, my beautiful mother – thank you for your support and love for all of us, not just me. I have learned the most important life lessons from you – to be ready for anything and to always, always, get back up from a fall.

And I know that parrot’s address

like a wink….

 

 

 

Alzheimer's Disease; Dementia Animal Anthony blogging death and dying depression Embarrassing moments Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Western Australia Wings

18 Comments »
Oct 26

Dementia dialogues 26

by jmgoyder

Anthony: I saw her in the corridor … earlier….

Me: Who?

Anthony: Julie – it was Julie.

Me: I AM Julie, Ants.

Anthony: Yes … it’s extraordinary.

 

Alzheimer's Disease; Dementia Anthony blogging death and dying depression Embarrassing moments Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Oct 21

Dementia Dialogues 21

by jmgoyder

Me: I’m a bit upset about these wrinkles on my cheeks that I’ve just noticed, Ants – see?

Anthony: Yes.

Me: What do you mean by ‘yes’? You’re supposed to say that you can’t see any wrinkles!

Anthony: But I can [and, OMG, he puts a finger into one of the many new little grooves of my left cheek!]

Me: I’m not happy about this, Ants, and, by the way, the only reason you don’t have wrinkles on your face is because the Parkinson’s Disease has made your face expressionless!

Anthony: That was not my intention.

Me: What? What!

Anthony: You look beautiful, Jules.

Me: Okay, but do I have wrinkles?

Anthony: Just the nice flavour.

I tried to laugh without further crinkling my face….

 

Anthony blogging Embarrassing moments Family Friendship Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Western Australia

12 Comments »
Oct 9

Dementia dialogues 9/10

by jmgoyder

Me: How come there’s water all over the floor? Did you tip your drink out again?

Anthony: Yes, because everybody is dead.

Me: What?

Anthony: This is a funeral home.

Me: No way! This is a nursing home – remember?

Anthony: All of the kids ….

Me: Are they still bothering you?

Anthony: I had to fight one last night.

Me: Did you win?

Anthony: Half and a quarter….

Me: Good on you, Ants! They won’t be bothering you again, I’m sure.

…………..

Anthony: Well come on, Jules – let’s go.

Me: Where?

Anthony: Around the block.

Me: Which block? The farm or the nursing home?

Anthony: The rose garden.

Me: What rose garden?

Anthony: Along the driveway!

Me: It’s too rainy and cold, Ants – sorry. Maybe tomorrow?

……………

The last several weeks have been a bit of a challenge for me because my anxious/depressive tendencies roared into my brain – WHAMMO! – when I mistakenly thought Ants was on the brink of death. I don’t want the knife edge of that grief again and am hoping that I am now better prepared.

Me: I saw an advertisement on TV the other day about cremation versus burial. What do you reckon? You know what I mean? For both of us of course.

Anthony: It’s far too early to think about that.

Me: Okay, Ants.

Anthony: There’s something ….

Me: Is it to do with my exquisite face?

Anthony: I wouldn’t go that far.

Me: What?

Anthony: But it’s quite nice, I suppose.

Me: Harrumph!

 

 

 

 

Alzheimer's Disease; Dementia Anthony death and dying depression Embarrassing moments Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

10 Comments »
Oct 1

Dementia dialogues 17

by jmgoyder

Me: Ants, is it okay if I write your life story?

Anthony: No.

Me: Why?

Anthony: Because I don’t exist.

[This is an exact rendition of our conversation yesterday.]

Alzheimer's Disease; Dementia Anthony blogging death and dying depression Embarrassing moments Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Sep 28

Dementia dialogues 0

by jmgoyder

Me: I love you so much, Ants.

Anthony: I wonder sometimes.

Me: What do you mean?

Anthony: The way you treat me.

Me: What?

Anthony: Like a bag of old rags sometimes. Look at yourself in the mirror!

Me: I don’t understand, Ants!

Anthony: It’s all right – I forgive you.

Me: Forgive me for what? I am doing my best! Why are you being so horrible to me?

Anthony: I just want to go home and see Mum!

Me: But she’s fine, Ants!

Anthony: This has been boiling up for ages.

Me: I don’t understand.

Anthony: Yes you do, and you only barely put up with me!

The above was an uncharacteristically angry and semi-lucid conversation during which I got my notebook out to record things exactly as they were said.

A marital row, I guess – no big deal. Anthony’s sudden mistrust and cynicism about me yesterday carried itself into today but was less acute. I hope this angry thing won’t last long.

Alzheimer's Disease; Dementia Anthony Australia blogging bullying death and dying depression Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

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Sep 19

Laughter

by jmgoyder

One of the best things about my relationship with Anthony is that we are usually on the same page when it comes to humour, AND we are both able to laugh at ourselves. Today, I was feeding him his lunch and this was our conversation.

Me: You like this chocolate mousse stuff don’t you?

Anthony: I didn’t always.

Me: Well you obviously do now – you’re like some sort of lizard with your tongue sticking out for every mouthful.

Anthony: Delicious.

Me: Okay well I have to go to work now (volunteer job) so is there anything you want?

Anthony: Your hair ….

Me: OMG yes, yes, yes, my hair is due for a trim – anything else?

Anthony: It’s a matter of urgency.

Me: Urgency! Are you kidding? My hair? How dare you!

Anthony: But your face is beautiful.

Me: Too late for that kind of rubbish, Ants – you’ve done your dash!

Laughter … the most wonderful, magical thing in the world.

 

 

 

 

 

 

Alzheimer's Disease; Dementia Anthony death and dying depression Embarrassing moments Family Friendship Grief Happiness Humour joy laughter LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Wings

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