jmgoyder

wings and things

Boredom

When Ming was little he only once said, “Muuuuummmmm – I’m booooored!” because I immediately retorted, “The only children who ever get bored are booooooring themselves!” From that moment, he became more self-sufficient.

Okay, the above is a summary of several similar conversations with little Ming not long after I stopped being interested in finding the missing lego pieces in a Harry Potter castle or two.

Today, in the nursing home, helping Ants with his lunch, watching the television series, my mother’s visit – the almost clockwork regularity of this routine – struck me….

I recently read an article about how boredom can be a good thing, that it allows a person to sit back and re-perceive things and embrace the boredom as a kind of contentment. I do understand this because I have experienced it. And with Ants these hours are valuable time together as he gets more and more incapacitated.

This whole acceptance thing has been wonderful for all of us but I’m beginning to realise that I have also stunned myself with a kind of boredom. And, if boredom = boring, then I am guilty.

I will still spend many hours per day with Ants, but am now excited about writing more seriously; I’ve even planned a schedule of writing ….

No way will I let that boredom thing creep in.

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Sleep-chuckling

This afternoon I went into town to see Anthony. By the time I’d done bits and pieces of paperwork and housework, I almost didn’t go in after all. I didn’t feel like going in, but then the guilt got to me.

I arrived later in the afternoon than usual after doing a couple of in-town errands. Anthony was asleep in his armchair so I put a blanket on his knees, made sure the heater was on, put the television on mute and sat down next to him.

Usually Ants wakes up when he hears my voice or anybody’s voice but this afternoon he was in slumber mode and, no matter how much noise I made, he didn’t wake up! Nurses came and went, and he even swallowed his 4pm pills semi-asleep, then I had to talk on my phone for ages, then Ming came in after knocking off, then a couple of the nurses came back for a chat, other staff came in to change towels in the bathroom, a cup of tea was brought in ….

…. And throughout these couple of hours I watched (on and off) our latest television series with my left hand inside Anthony’s shirt collar. But he still didn’t wake up!

I wanted to tell him so many things: how the camellias are thriving (I’ve been taking little flowerettes in lately); that Ming has a new friend; that I’ll bring more chocolate tomorrow; that I missed him so much that looking at photos of our years before Parkinson’s sometimes made me cry; and how he was, to me and to Ming, the best example of a good father and husband.

Of course I have poured out these various profundities to Ants before but today he was so unwakeably asleep that I had to pour all of that stupid emotional stuff into the toilet paper in his bathroom.

On resuming my position by Anthony’s side, my hand back inside his collar, I wiped his chin then saw that he was smiling in his sleep. Once again I tried to wake him gently but it wasn’t possible to get much more than a few blinks and then he was asleep again.

Then, all of a sudden, Anthony began to chuckle in his sleep. Of course I have seen this before with him but only occasionally. This time, the chuckling went on and on, for well over an hour! It was amazing and beautiful and I am so glad I was there to witness this.

Tomorrow, I will pick camellias to take in, then I will tease him about his sleep-chuckling haha!

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Happy hours

Anthony’s increasing ability to smile again continues to flabbergast me. This afternoon, I arrived at the nursing home and, on entering his room, saw that two of our best friends (a husband, F, and wife, J) were already there. J whispered to me that Anthony’s face always lights up when I come into the room. They are frequent visitors to Anthony, so they often see this but the fact that J said this to me really made my day.

J has a sense of humour that is slicingly clever and she has this ability to get straight to the point with a unique mixture of irony and kindness. When she invited Anthony to the movie she and F were going to see – about euthanasia – Anthony politely declined and I guffawed.

F (an old school friend of Anthony’s) constantly teases him about past girlfriends but this afternoon Anthony managed to eke out a couple of eloquent retorts and the mutual banter was a delight. I poured a couple of small glasses of wine (it’s Sunday!) then F and J left to go and see the euthanasia movie.

It was such a happy hour and I am so grateful for these friends who help to normalise the situation. J told me that when they arrived and asked Anthony where I was he told them I was hanging out the washing! I think this means that perhaps my presence in his room every afternoon (well, mostly) explains my absence in the mornings and nights. It is possible that he thinks I am doing chores, cooking dinner, possibly even gardening!

Now that I am over the whole tragedy-of-husband-going-into-nursing home, and now that Anthony, too, accepts the status quo and often thinks we are at home anyway, our afternoons are happy.

I usually sit on the side of Anthony’s armchair and we watch another episode of whatever television series I’ve acquired; he often sleeps the afternoon away; I sometimes socialise with the staff and other residents; cups of tea + cake are delivered; his pills are dispersed by his favourite nurse, D, who Ants calls his girlfriend.

When I was unwell last week my wonderful mother substituted for me and sat next to Anthony in his room, knitting, until he suddenly said “Are you going yet?” Hilarious.

And Dina, my decluttering friend, visited Ants on a day when she and I were supposed to be having brunch (but I was still bilious). What an incredibly kind person to do this for me!

The funniest of these many happy hours, though, are Ming’s visits to Anthony. Big, loud and assertive, he goes into Anthony’s room and, if Ants is asleep in his chair, Ming doesn’t wake him. But if Anthony is awake, Ming will lie on the bed and they will have a chat. It’s probably quite alarming for staff to come into Anthony’s room and see this great big hairy-legged boy-man-creature lying on Anthony’s bed with no care whatsoever about protocol or the cleanliness of linen.

Sometimes, when Ming’s and my visits to Anthony coincide, there is friction between Ming and me. I’m not quite sure why this is but he seems to relate better to Ants when I’m not there. And vice versa. Nevertheless, Anthony’s pride in Ming is overwhelmingly evident and he often ‘sees’ Ming in the corner of the room (hallucinations).

I’ve begun to appreciate every single hour, especially the happy ones. These hours more than make up for the desolate ones.

[Note to blogger friends: I am a bit preoccupied with above so haven’t been reading – sorry]

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Sunday afternoon at the nursing home ….

Last Sunday I began a ritual that I continued today, and will keep doing every Sunday now that I know it ‘works’. I will bring a bottle of really lovely wine in and Anthony and I will partake in sipping thimble-sized servings in massive glasses.

As I have to drive 15 kms home and Anthony can no longer drink a whole bottle of brandy in one sitting anymore (I’m kidding) neither of us can drink very much of course!

Nevertheless the reality of opening the wine and pouring it into glasses brought from home, toasting each other, exchanging memories of parties from long ago … all of this makes Sunday afternoons fantastic.

At one point, this afternoon ….

Me: Why are you looking at me like that?

Anthony: You look particularly beautiful today.

Me: What did you say?

Anthony: Your hair is brushed.

Me: ARGHHHH! What do you think of the wine?

Anthony: Not bad.

Me: Why can’t you ever say ‘it’s wonderful!’ instead of ‘not bad’!

Anthony: It’s wonderful.

Me: Okay, let’s clink glasses for a toast – to you and me, Ants. I love you and you love me and that’s the main thing.

Anthony: Can you just get the animals off the table first?

Me: It’s not a table; it’s your bed and you’re hallucinating!

Anthony: You always say that!

Me: It’s part of your Parkinson’s disease – please don’t worry about it. When you see all of those dogs and cats and calves in the room, try to remember that they are not really there and that you are hallucinating.

Anthony: So how about this baby?

Me: What baby?

Anthony: This one [pointing to his lap].

Me: Okay, Ants, is it Ming?

Anthony: No. Ming isn’t a baby any more.

Me: So who is the baby?

Anthony: I don’t know.

I am astounded that, ever since our niece gave birth to her first baby several weeks ago, Anthony keeps ‘seeing’ babies on his lap. It is so so so weird! But it’s also rather magical and wonderful that somehow Anthony’s PD brain has registered this new addition to the family.

Sunday afternoon at the nursing home; a delightful experience!

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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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Paro: the robotic ‘pet’

It’s around a year since I became aware that staff at Anthony’s nursing home were raising money to buy an electronic pet to be shared amongst people with dementia. ‘Paro’, a fluffy, white seal pretend-pet, once its battery is charged, is extraordinarily real, warm and responsive, with blinking eyes and little sighs.

Here is a link to a bit of information about Paro: http://www.theguardian.com/society/2014/jul/08/paro-robot-seal-dementia-patients-nhs-japan

Anyway, a single Paro cost thousands of dollars, so it has taken a lot of incredibly determined fund-raising efforts from staff, donations from relatives, friends, and the board of management, to purchase the first of two Paros for this particular nursing home.

Okay, to begin with I was rather cynical and a bit mystified as to how this robotic ‘pet’ could help, and the expense seemed over the top! But today I visited the dementia cottage and B was in her room cuddling Paro. I asked B if I could see what Paro looked like and she said yes. So I just touched the furry little bundle nestled into B’s collarbone and Paro did a little squeal of joy and its eyes looked at me. I wasn’t prepared for this so I did a little squeal of shock and B laughed then cuddled the real warmth of Paro against her chest before dismissing me.

One of the staff told me today that when one of the women in the dementia cottage was in tears, Paro was given to her and she immediately calmed down.

Like doll therapy, Paro, the robotic seal, is probably a controversial dementia-care tool/issue, and it/he/she is certainly incredibly expensive. Also, for those who are unfamiliar with all of the different categories of dementia, the presence of a Paro might seems utterly weird.

But, for those of us who don’t have dementia, and who worry about the dignity and comfort of our loved ones who do have dementia, just suspend your disbelief for a moment.

It is – this Paro – a beautiful invention.

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Day off

I decided to take a day off from visiting Anthony so just texted Ming to visit after work and he texted “Sure” – brilliant!

Instead I have been catching up with laundry and housework and further decluttering. It’s astounding how making myself accountable to Dina is so effective!

The weather is winter warm so at one point I took off my jacket and …
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Well at least it wasn’t a cockroach!

My feeding of wheat to the peafowl and guinnea fowl is deliberately haphazard because there is plenty of ‘food’ for them without the wheat and I don’t like them getting too dependent. Nevertheless as soon as they hear the back door open, they start running towards me – it’s so funny.
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Then there is quite a bit of competition as to who gets to eat first.
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Yes, I know she looks like Gutsy but she isn’t.

After they’ve eaten their fill, they bask in the winter sunshine.
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I’m a bit rusty with the photography but wanted to take a few new photos to show the women I’m visiting in the nursing home, three of whom are not in the dementia cottage. Yesterday I visited Gertrude (not her real name) who has only recently become a resident. She has Parkinson’s disease too and she was commiserating with me about Anthony who she said was “so young!” I guess 79-year-old people do seem young to 90-year-old people! At one point we discussed the pros and cons of diseases:

Gertrude: Tell me, which do you think is worse – Parkinson’s disease or that other one? (She pointed to her head)

Me: You mean Alzheimer’s disease?

Gertrude: Yes.

Me: Well Anthony has both now so I’m not sure ….

Gertrude: Both? This isn’t fair for him.

Me: Well it’s not Alzheimer’s exactly; it’s dementia caused by his kind of Parkinson’s disease.

Gertrude: I don’t have that.

Me: No, I can see that! You don’t have the shaking thing either and Anthony is the same.

Gertrude: I’m improving and sitting in this chair is so much better than lying in that bed.

Me: Do you have pain?

Gertrude: Just a bit of arthritis. Nothing much.

Me: I’m so glad. Anthony doesn’t have pain either – such a blessing.

We exchanged a smile and a hug and I went back to Anthony’s room which is in a different section.

Well I better get back to finishing the jobs I need to list as “done” for my email to Dina tonight!

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Home away from home

I wake up every morning, alone in this old, cold, quiet farm house, and smile into the memories of when it was full of warmth, people, noise. I know I should light the Aga, get the fireplace blazing, turn the radio on loud, make scrambled eggs, but Ming has already gone to work and I’m not hungry.

So I get showered and dressed fast, so I can go to the nursing home to be with Anthony for the day. His room has now become my home-away-from-home so much so that I want to be there more than I want to be here.

I like to get there at around 11am but sometimes it’s not until the early afternoon (depending on other various commitments). This daily reunion is fantastic:

Me: DAAAAAAARLING!
Anthony: How do you always know where to find me?
Me: I’m a genius!

Then, after a hug/kiss embrace, I proceed to tidy the room a bit, move his chair so I can put my chair beside his, turn the heater on (it should always be on but sometimes isn’t), put a blanket on his knees, have a chat, help him with lunch or afternoon tea.

Once settled, we watch whatever series I have on hand. House of Cards is our current choice and Ants loves the Britishness of this and I love the plot!

So, in this home-away-from home nursing home room, I put my feet up onto Anthony’s lap and we are together.

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These boots were made for walking ….

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I have just returned from a delightful couple of days in Perth with a wonderful friend. She flew down from up north and I drove up from down south and we stayed at a beautiful resort, shared some fine wine, extraordinary pizzas, watched a very complicated movie twice (because we didn’t ‘get it’ the first time), and enjoyed chef-styled breakfasts each morning.

It was brilliant! We each had various big-city things we had to do so yesterday we went our different ways for a few hours and I visited my friend, Rose, at Dimario http://dimario.com.au

Dimario is a shop that is close to my heart for many reasons (for example, I love boots). But the main reason is that several years ago, when Anthony wasn’t so ill, we walked in and I fell in love with a pair of boots that were extremely expensive and extremely beautiful. Ants and I had to go back to our hotel room to mull it over and, despite being a rather scroogy careful-with-money person back then, he wanted me to have those boots.

From then on, whenever we went to Perth (which was only once a year), Anthony would actually suggest going to Dimario. Rose and Nikki would welcome us like old friends and Ants would watch as I tried the various boots on, usually convincing me to get the better, more elegant and expensive ones.

Then, one year, it became too hard for him to get out of the car; another year, it became too difficult for me to take him from the hotel to the shop, so I went by myself; another year, he was in a hospital in Perth having his Parkinson’s Disease medications reassessed; another year Ming came with me and cloned Anthony in picking out the best pair of boots; another year we didn’t go to Perth at all as Anthony’s health had deteriorated too much. I guess that was around four years ago and my memory of this phase in our lives blurs a bit around the edges.

To see Rose again yesterday, despite the fact that it’s probably been a couple of years now since I visited her gorgeous shop, was incredible. I was greeted with a hug!

Rose: And how is your beautiful husband?

Me: He’s in a nursing home now but he still remembers you and I need to buy some boots so I can wear them to the nursing home and remind him again.

Rose: I will always look after you; what about these?

Me: Not me – I rather like those….

Rose: And how is your beautiful son?

Me: Still beautiful. What about those embroidered boots?

Rose: They’re on sale – let me see if we have your size.

Rose then told me that Nikki had retired but had a pair of the same boots and I asked her to give Nikki our love. She said she would, then, when the boots were a perfect fit, Rose discounted them even further, I bought them and we had another hug as I left.

After that, I picked my friend up and we went back to the resort. We shared a mutual admiration of our purchases then began (again!) to watch the stupid movie and order pizza.

Today, I dropped my friend at the airport and headed home. We are going to meet like this every few months; it’s a wonderful arrangement and, even though she and I have lost touch on and off over the decades, we are still the same buddies we were as teenagers.

And I can’t wait to show Anthony my new boots tomorrow!

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Anthony’s ‘girlfriend’

There is a lovely woman (I will call her Mary) who works as supervisor during afternoon shifts at the nursing home. She and Anthony have such a rapport now that his slow smile stretches into a grin when she enters his room to give him his 4pm meds. The three of us now joke that she is his ‘girlfriend’.

Today was no exception:

Mary: Hi Anthony, I’ve got your pills.

Me: Ants, it’s your girlfriend!

Anthony: Hi … (smiling)

Me: It’s Mary, Ants.

Anthony: Hi Mary.

Mary: Here are your pills, Anthony.

She and I then got chatting while Anthony swallowed his pills (it sometimes takes awhile). I had my one remaining PhD student’s nearly-completed thesis on the table and was checking it for typos. Mary was curious so I told her I used to work at the university and that I’d done a PhD too years back and turned it into a book about Alzheimer’s disease. She asked if she could read it so I gave her the copy I have in Anthony’s top drawer. Then she got called away.

A few moments later, I asked Ants if the pills had gone down.

Me: Have you swallowed them?

Anthony: No.

Me: What? Do you need water? Open your mouth. Yes, they’ve gone down, your mouth is empty.

Anthony: No.

Me: What do you mean ‘no’?

Anthony: Ring the … girlfriend. She might have them.

Me (laughing and hugging him): I don’t need to ring her – she’s here! And the pills have gone down, trust me!

I continued to read the thesis when all of a sudden Anthony belched loudly. I put my pen down and glared at him.

Me: How dare you burp in my presence!

Anthony: I’ll have you know … I’m whatshername’s boyfriend.

I find it absolutely amazing that, despite the confusion of Anthony’s dementia, his sense of irony and humour can be so extraordinarily spot on!

After laughing my head off, I took my leave with the usual excuse of ‘just going to get some groceries’.

Anthony: Don’t be too long.

Me: I won’t and just remember I am your real girlfriend.

Anthony: No you’re not – you’re my wife.

It was a very happy drive home.

Another irony is that Mary has borrowed my book which is based on a similar experience from my years-ago nursing days. The way Mary and Anthony interact parallels my experience with a patient I called ‘Joe’, whose refrain became the title of the book “We’ll be married in Fremantle.”

Perhaps the fact that I no longer work in the dementia wing is, despite the difficulty of having had to make this decision, a good thing. As I am now a lady of leisure again, I have much more time to write about the subject of dementia which is so close to my heart and has been for over 20 years. Now, of course, it’s even closer with Anthony in its grip.

My mother and I had a laugh on the phone today because she had visited Anthony in the morning and, after an hour or so, he suddenly said, “Are you going home now?” Having been dismissed, she gathered her knitting and left after giving him a hug.

Me: How come you asked my mother to go? She was hurt.

Anthony: I didn’t.

Me: You asked her if she was going home and she took the hint!

Anthony: She’s not you.

Okay, so my mother is out of the competition but there is still Mary to worry about – haha!

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