jmgoyder

wings and things

Nonsense!

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Not long after one of Anthony’s nephews had visited us the other day (at the nursing home), during which we all shared a lucid conversation, Ants suddenly said ….

Anthony: I need a dressmaker.

Me: WHAT?

Anthony: A dressmaker. I want to make a dress.

Me: But I don’t wear dresses! I’d rather eat a raw egg than wear a dress! I HATE dresses!

Anthony: Not for you.

Me: So who do you want to make a dress for?

Anthony: For Stuart [this is not the real name of the nephew].

Me: Why the hell would Stuart want a dress?

Anthony: I just want to make him one.

Me: Anthony, are you kidding around or are you really crazy?

Anthony: Just find me a dressmaker, Jules.

Me: Okay, if you say so.

By then I could no longer contain my laughter at the image of Stuart in a dress that Anthony had somehow made for him. I hugged Anthony tight, guffawing, then told him I still loved him even though he was stark, raving mad – and he gave me one of his wonderful smiles.

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This is, by far, the most bizarre conversation I have ever had with Anthony because I couldn’t find a reference point for it. I am wondering today if it could be the outfits worn by the cast of The Good Wife (a series we are watching), but that still wouldn’t explain why Anthony would want to make a dress for his nephew!

One of the things I have decided to stop doing, though, is to try to make sense of nonsense. And I am not being disparaging of Anthony when I say that he often talks nonsense because this is a fact.

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Okay so I tease him a bit when he talks nonsense but that’s all part of the fun really. In fact, I actually find our nonsense conversations absolutely fascinating and much more pleasant than these …..

Anthony: When are you taking me home?

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Me: I can’t. You’re too heavy. Stop asking me to do the impossible.

Anthony: I’m sorry I’m such a disaster.

Me: You’re not a disaster. You have Parkinson’s disease.

Now those no-nonsense conversations are the ones that are heartbreaking.

I prefer nonsense!

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Note: I took a whole lot of photos yesterday to show Anthony today in the hope that he will feel as if he has been home.

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Predicting unpredictability

I think one of the most difficult things for carers/families/friends of people with Parkinson’s disease, Alzheimer’s disease, or any disease that involves dementia, is the unpredictability of every single day.

Two days ago I sat with Anthony all afternoon and he slumbered the whole time away even when I punched him in the shoulder a couple of times to make sure he was alive. Instead of waking up, he just kept chuckling in his sleep – over and over again! So I just sat there next to him with my arm around his shoulder and watched TV and ate my lunch. A few hours later I informed the nurse-in-charge that he was a bit sleepy and that I was a bit worried he might have had another TIA (mini-stroke).

Me: I’m going to leave my scarf on the chair next to his, so he gets the impression I will be back soon. Is this okay with you?

Nurse-in-charge: Of course!

Later that evening, I rang the nursing home to see if Ants had woken up and the nurse-in-charge reassured me he was fine and that she’d showed him my scarf (an indicator that I would be back).

Me: You are okay with me not coming back?

Nurse-in-charge: Of course!

Okay so I have blogged about this before – this kind deception thing whereby I leave Ants to come home but always say I will be back soon. The reason I do this is because it is kinder than saying I am coming home without him.

This tactic has worked for many months. I turn up the next day at the nursing home and Ants doesn’t seem to recollect that I didn’t return the previous evening.

But today was different! I did my usual:

Me: Just going to get some groceries, Ants – I’ll be back later.

He looked at me with an expression of such lucidity that I was taken aback.

Anthony: You didn’t come back last night, Jules.

This is so weird! Today he remembers yesterday’s promise of tomorrow, but has forgotten so many of yesterday’s tomorrows that every single today is confusing even for me!

Bottom line in this kind of situation is to simply go with the flow I guess?

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Nursing home friendships

One of the most beautiful things about being with Anthony in the afternoons – in his nursing home room – is the easy friendships with various staff.

These various staff have various roles, of course: domestic duties, carer duties, medication duties, managerial duties, catering/cooking duties, OT duties, volunteer duties, supervisory/teaching duties, orientation duties, and many, many more. When any staff member (regardless of role) drops in – I always either ‘pause’ or ‘mute’ the TV. This creates a little bit of silence, just enough to enable an interaction that will make Anthony smile. This is because he was always gregarious, and loud, and the life of the party, and nobody will ever know this unless I tell them. Many of the staff now understand how a bit of banter with Anthony can rekindle a semblance of the BIG personality out of the tinyness of who he is now (quiet and thin). They haven’t just discovered this via me, they have also discovered it via him.

There are certain staff that can, in a few seconds, rustle him out his silence, conjure the smile, make him feel valued, but of course they are always rushed, doing their own jobs and not wanting to appear to be wasting time. Recently, due to the rush of work, two of the carers opted to come and visit Anthony on their days off so they could spend more time with him – I was astounded by their generosity, and so grateful!

But, even during work hours, those quick visits are invaluable and, whenever I am there too, staff will often drop in and have a chat with us. I think this is wonderful! Whenever any of the staff drop in to simply say hello to Anthony and me – to chat, gossip, joke, hug – I can come home with the knowledge that he is well cared for and, more importantly in a way, cared about.

Here’s an idea: what if every single staff member were allocated half an hour per day to spend a bit more time with a resident? This could be used in five-minute increments so that staff could linger a bit in various residents’ rooms just for a chat, instead of having to rush off to their various duties. One of the chefs at the nursing home dropped in to Anthony’s room the other day to admire the artificial roses that she thought were real.

Me: Haven’t you noticed these before?
Chef: Yes, but I never have time! They look so real!

We had a hurried conversation and she zipped off back to the kitchen. I wanted to give her a massive hug but I restrained myself as I seem to have become overly-huggy lately. A bit later in the afternoon:

Anthony: Your roses are a hit.
Me: Yes! Anthony: But I planted them. Give that lady a cutting. Me: Yes.

I wish that I could name the various staff who have become friends of ours, those people who, in the line of duty, don’t mind detouring in order to offer kindness and friendship. But I respect their privacy so all I can do here is to say thank you to them, every single one of them, because they will know who they are.

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“I’m gonna love you like I’m gonna lose you….”

There are many lines in this song https://www.youtube.com/watch?v=DC8FsIdVi9Y that echo one of my many recurring dreams about Anthony and me.

When I last posted, I described a dream where Ants had miraculously recovered; now that is definitely a beautiful dream.

A less beautiful, recurring dream is the one about death. In this dream, Anthony is dead and my dream-self is grief-stricken. But then my real-self wakes up from the dream and realises that he is alive after all. Many of the lyrics of the this song really got to me and are as follows:

I found myself dreaming…
Split second and you disappeared…
Wake up in tears with you by my side…
Breath of relief when I realised…
Whenever we’re standing…
No, we’re not promised tomorrow

Ming of course is not at all keen on either listening to, or reading, the lyrics of this song and, now that he has become musically superior to me, he likes to throw me his opinions:

It’s soooo repetitive, Mum!
It’s so cliched – oh, Mum, you can’t possibly like this song!
NO I DON’T WANT TO HEAR ABOUT YOUR ROMANCE!
Yes, let’s have a chat about love … I like this girl who….
NO I DON’T WANT TO HEAR ABOUT YOUR HEARTBREAK!
I’m off to my shed now, Mum. Love you!

I think I might just listen to the song one more time before I go to bed because I don’t care what the Ming says, this has become my song for Anthony.

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Sundown

When the day begins to close its curtains on the sun, people with advanced dementia often become restless. This kind of agitation is called ‘Sundowner syndrome’ and I’ve written about it before.

Anthony is definitely affected by the syndrome and, by around 4pm, he is quietly distressed and confused. I am adapting as well as I can to the difference between 11am and 5pm; i.e. at 11am Ants is lucid and able to express himself verbally, but by 3pm he sometimes thinks that the television show (at the moment Doc Martin) is actually happening in real life, and by 4pm he begins to descend into such a state of confusion that when I say, “Okay I’m off to get some wine”, he just replies, “Don’t be too long, Jules!”

The domestic and care staff at this nursing home are so wonderful and many have become friends; they all know that it is best to say to Anthony that ‘Jules will be back soon’.

Today I bumped into the wife of a beautiful man who, before he died a year ago, was next door to Anthony. She is elderly too and using a walking frame. Let’s call her Trudy.

Trudy: So how is your husband?

Me: Very confused now … well, you know how it is.

Trudy: You wonder what they are really thinking don’t you.

Me: Yes. You must miss him so much.

Trudy: It’s a year now.

And her eyes filled up.

Anthony and I are so lucky to have each other and he is luckier than most because he has a younger wife who is determined to ensure he is cared for. It is a bit of a unique situation because most of the residents’ spouses are either deceased or struggling with their own health challenges.

When I visited a totally lucid 95-year-old woman today, she expressed so much concern about her 70-ish son that I felt a bit awestruck by her courage and compassion.

Jane: He had to have a shoulder operation.

Me: So when will he be back?

Jane: So what’s your name again?

Me: Julie – you know, my husband is two rooms down. How’s your pain?

Jane: It’s not the pain, I just feel so exhausted all the time as if I’ve been run over by something.

Me: Like a truck?

MUTUAL LAUGHTER

I want to keep writing about this ongoing story of dementia; I want to critique the various interventions that are in place; but I also just want to BE with Ants.

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Babies

Today, my niece and her husband visited Ants and me in the nursing with their firstborn, my first great-nephew. I also have a great-niece of about 18 months of age who is, apparently getting used to her strange, new, tiny cousin!

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We also visited another of my niece’s auntie’s mother-in-law in a section of the nursing home adjacent to Anthony’s. Everywhere we went there were looks of admiration, surprise and joy from both residents and staff.

Anthony was a bit nonplussed and didn’t even seem to understand that he had, once again, become a great-uncle. We couldn’t put this beautiful new baby into his arms because it probably wouldn’t have been safe due to his PD. Oh well, I got to hold the little beauty momentarily before he started crying, and then I gave him back to my niece for a feed.

I have deliberately left names out of this post for the sake of privacy but just want to express my gratitude to my niece and her husband for bringing their beautiful baby in to see Anthony.

It is kind of weird to be a great-auntie to two babies now but it is also wonderful – absolutely wonderful!

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Dina

I wrote about Dina from Chaos to Clear in previous posts, describing how this wonder woman helped me to declutter and reorganise the spaces inside and outside this house. The process was a twice-a-week visit from Dina, over a period of several months. She/we even tackled the sheds despite the possible presence of asbestos.

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During this process, Dina and I became friends. She visited Anthony with me (where we sorted a huge box of old photos and another box of old paperwork), and she even visited Anthony last week when I was away in Perth!

Dina also supported me in a face-to-face meeting with the managers at the nursing home about my desire to continue to visit various residents despite having resigned. Her presence at this meeting ensured that permission would be granted, and gave me the confidence to state that I was already a family friend of many of the residents.

Anyway, this week I suddenly found myself a bit overwhelmed again with a new accumulation of unopened mail, the dregs of clutter I was supposed to have eradicated/given away, and Ming’s stuff here and there untidying my newly tidy house. So I emailed Dina asking her to come back and help with these last jobs.

Then – the next morning – before Dina even had a chance to reply, I emailed her again to retract my request and that I could do it by myself but I needed to be accountable to someone.

Dina emailed me back saying yes and to just imagine she was there looking over my shoulder. So for two days now, I have been reporting back to her about what I’ve done, and she has been encouraging me (all of this via email). This kind of accountability has worked wonders in terms of motivation!

Depression (yes, I have it) sometimes means that the person afflicted wastes days worrying, and nights dreaming, about tasks that only take an hour or so. The fear of those tasks is, of course, irrational, but when you are in the throes of depression and/or anxiety, even the simplest of tasks can be overwhelming.

I haven’t admitted to many, including Dina, that I battle with depression but I’m sure she realises and I so appreciate her kindness and patience with me. And her incredible support beyond the call of duty!

Who would have known that when I simply googled “chaos” I would find such a beautiful friend. Thanks, Dina.

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Hugs

Now that I have resigned my part-time job as life-style assistant in the dementia wing of the nursing home, it has been an absolute joy to continue to visit the women I’ve become so fond of.

The hurt has transmogrified (oh how much I love that word!) into the hugging thing and, this afternoon, I visited and kept it simple.

We just did a lot of hugging.

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Paperwork phobia

I have a bit of a paperwork phobia.

I don’t go to the post office anymore because it is too scary. Ming usually collects the mail on his way home and brings it to me in my writing room. I politely thank him or else say:

TAKE IT AWAY, TAKE IT AWAY, TAKE IT AWAY – JUST EAT IT!

I don’t quite know why I have this phobia because most of these letters are relatively harmless, even innocuous, and I pay most of the bills online because I don’t have an email phobia (luckily). It would be good to admit that my paperwork phobia was due to my objection to so many trees being cut down to create all of this mail but, even though I agree with myself here, it’s not that. It’s more to do with the envelopes and what might be inside them.

So the letter(s) sit on my desk briefly, threateningly, until I throw carefully place them, unopened, into the box of things-to-do.

Once the box is full, I take it to the nursing home and place it on Anthony’s bed. We hug and I explain it is a ‘paperwork day’ and that I need his moral support. It is only then that I have the courage to open all of the envelopes, file anything important and trash the rest. This usually takes about 10 minutes.

Okay so this is a bit tongue-in-cheek but also very true. I literally can’t seem to do the paperwork unless Anthony is by my side and, once it’s done, I am so happy that I get a bit frolicky and this gets a smile.

I also have a bit of a phone phobia ….

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A way with words

Despite the fact that Ming always loathed anything to do with literacy when he was at school, he has a wonderful way with words and, like Anthony, often comes up with the funniest phrasing.

The other morning I was about to go in to see Anthony and, wanting to add a bit of colour to the day, now that the weather is wintery, I’d dressed in an orange shirt and a multi-coloured jacket that had a bit of orange in it. As I was about to leave the house, I had this brief conversation with Ming:

Me: Do you think this shirt clashes with the jacket, Ming?

There was a long pause as he looked at me, his brow furrowing in exactly the same way Anthony’s is furrowed.

Ming: I have a bit of a problem with the jacket, Mum.

Me: What? But it’s my favourite jacket!

Ming: Well it makes you look a bit like a hippy.

Me: I’ll have you know it was a very expensive jacket and everyone else loves it!

Ming: They must have very poor taste then.

Me: Well thanks a lot, Ming, for the vote of confidence! I had wanted to be like a kind of rainbow today for Anthony’s sake.

Ming: Oh! Sorry, Mum. In that case your outfit makes perfect sense but it is TOXIC to the fashion industry, just so you know.

I couldn’t stop laughing on my way into the nursing home and wondered if Ants would have the same reaction. So, on entering his room, I asked him how I looked.

Anthony: Messy.

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