jmgoyder

wings and things

Aug 22

Whoops!

by jmgoyder

Oh I am such an idiot!

Okay, this is what happened. I stayed with Anthony later than usual this afternoon because his favourite nephew arrived for a visit and I didn’t want to miss out on that. Then, Anthony’s 5pm dinner arrived as the nephew was leaving, so I ended up helping Ants with the soup, mornay and dessert.

Once that was done, I turned the television onto the ABC News channel and put it on mute as I gathered my stuff to leave. Usually I say I am going shopping, or to the chemist and I’ll be back soon but tonight I told the truth.

The only reason I admitted I was going home was because the first thing he said to me when I arrived this afternoon was:

You didn’t come back last night. Where did you go?

Now the trouble with lies is that sometimes you forget them. So I said:

I can’t remember!

Anyway, as I was putting a jumper on him, and getting a blanket for his knees, and putting the two camellias I’d picked into water, and settling myself into a chair next to him, I suddenly remembered. The following is our conversation:

Me: That’s right! I remember now!

Anthony: You always say I’m the forgetful one.

Me: Well I’m getting just as bad. Anyway, I went home to make the pea and ham soup – remember I showed you those massive ham hocks?

Anthony: Where is the soup?

Me: Whoops – I forgot to bring you some. I will tomorrow. Sorry!

Anthony: Well I’ve just come back from U. and I.’s place in Serpentine. [Note: these relatives are deceased, and Serpentine is 160 kms north]

Me: Really? So you must be exhausted!

Anthony: Yes. So I just want you to get some paper animals in the glove box.

Me: Okay – anything else?

Anthony: A couple of paper animals.

Me: Which ones?

Anthony: Well, they should be in the letterbox … but dead.

Me: Don’t worry, I’ll take care of it.

Anthony: You might be sitting on them. Get up.

Me [getting up]: Nope – no paper animals.

Anthony: They don’t appear to be there.

Me: You’re hallucinating again, Ants.

Anthony: You always say that.

Me: Can you just shut up so we can watch the series?

Anthony [fussing with the blanket on his knees – a constant thing]: The little chap’s had a good day; he hasn’t moved much.

Me: That’s good. It means he’s happy, Ants!

So the fragments of our afternoon conversation ranged from eloquent to incoherent, nonsensical to logical, silent to noisy etc. and I still haven’t figured out if the ‘little chap’ on Anthony’s knee is baby Ming or a dog!

All in all, it was a great afternoon but, just as I was leaving, Anthony suddenly became agitated.

Anthony: But you can’t leave me here. We need to be in the same bed.

Me: I have to go home to rescue the pea soup and I’ll come back tomorrow morning.

Anthony: Why can’t you stay here with me tonight? I don’t know this place! I’ve only ever stayed here once before and it’s where J. and P. got married.

Me [sternly]: Listen, Ants, you are in a nursing home and you are sleeping here tonight and I am going home but will be back tomorrow morning.

Anthony: No!

At this point one of the wonderful carers, having overheard our conversation from an adjacent room, came into Anthony’s room to reassure him and I gave him a millionth kiss and left.

It’s the first time for ages that I have felt distressed driving home. No tears but just distressed that he was distressed.

So an hour ago I rang the nursing home and the nurse-in-charge told me that he had just been settled into bed but she would go and check again. She is, by far, Anthony’s favourite and, when he was upset and confused earlier he actually asked for her by name, describing her as the nice one in the red shirt. She has even been nicknamed his ‘girlfriend’.

Anyway, I’ve now decided to never ever tell Ants that I am going home – never! I will go back to saying things like:

Just going to the chemist to get toothpaste; what kind of chocolate do you feel like; do you want beer? etc. AND: I won’t be long – see you soon….

No more whoopsies!

IMG_4653

blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

45 Comments »
Aug 21

Home is where the humour is!

by jmgoyder

After posting that boring boredom post yesterday, and in thinking about writing more seriously again, I made a couple of simple decisions.

1. Persevere with the idea of writing a book about Parkinson’s Disease (utilising various blogposts over the last few years), with the working title of Anthony’s Smile; and

2. Concentrate on blogging my conversations with Anthony, not just the current ones but the past ones. I have already blogged some of these but I have also made notes over the years so I will have to transcribe these.

The reason I want to write this book (which has almost written itself via my blog) is mostly to demystify the nursing home experience – to make it less frightening for both relatives and prospective residents.

Of course there are other reasons to write this book, i.e. I wish I’d known about the UN-stereotypical symptoms of impending Parkinson’s Disease (inability to blink, blank face, constipation, hallucinations, strange behaviours, weird wordage etc. etc.) before we got Anthony’s diagnosis all those years ago.

So my focus over the next few weeks will be on dialogue – mostly Anthony’s and mine with a bit of Ming thrown in. I think that these dialogues are an important way of recording/remembering all of the words that are so easily forgotten, or dismissed as nonsense.

For example:

Me: Ants, you’re so skinny! (patting his absence of a tummy). Are you doing sit-ups?

Anthony: Yes (looking at me in a sneaky way).

Me: So, when exactly do you do these sit-ups?

Anthony: When they need doing.

He makes me laugh more than he makes me cry, this fantastically funny husband of mine!

blogging Family Friendship Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Teenagers Western Australia

38 Comments »
Aug 11

A new adventure

by jmgoyder

The other morning I entered a new realm; I went along to a local community gardening group get-together. Even though I knew some faces, there were only three people I actually knew (the ones who invited me). It was such a comfortable and lovely group and nobody that I spoke to seemed to mind that I didn’t have a clue about gardening.

I hesitated to admit to anyone that I have never actually liked gardening; instead I said that I was interested in learning (which is true!) And when one person told me that established roses were almost impossible to kill, I had to admit that that I only had a couple left.

IMG_4618

In fact, there are only two rose trees left on the driveway and, yes, I do feel a bit guilty about this. However, my decision to stop watering plants a couple of years ago, long after Anthony went into the nursing home, was based on economics. Every time a tap/hose is turned on, the bore is activated and the electricity bill soars.

Nevertheless, because of Anthony’s gardening prowess decades ago, we have the most beautiful garden!

IMG_4625

The challenge now will be for me to learn how to grow vegetables and it is so great to have a local group of people from whom I can derive tips!

My lack of gardening prowess is embarrassing and my close friends laughed without inhibition at the fact that I was joining the gardening group.

Watch this space!

PS. To blogger friends: I haven’t been very well lately so haven’t kept up with posts.

Australia blogging Embarrassing moments Friendship Happiness Humour joy

26 Comments »
Aug 2

Sunday afternoon at the nursing home ….

by jmgoyder

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!

Australia blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Wings

36 Comments »
Jul 22

Nursing home friendships

by jmgoyder

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.

Australia blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Teenagers Western Australia Wings

35 Comments »
Jul 14

Weird and wonderful

by jmgoyder

Anthony had visitors today when I arrived – his oldest friend, F, who often drops in with his wife, J. But today it was F with his eldest daughter, T.

He/we have had a lot of visitors lately and most people say, when I go outside to see them off and thank them, that Ants looks better.

The weird and wonderful thing about this is that he actually has started to look ‘better’, feel better, respond better, smile more readily, quip sarcastically, banter with me and with visitors.

I find this both fantastic but also bewilderingly fascinating because Parkinson’s disease doesn’t go backwards; that’s impossible? And yet, like the couple of nephews who visited on the weekend said, “He seems to be improving!”

Of course, in physiological terms, Anthony is not improving (i.e. although occasionally still able to walk with the use of a walker and the help of two carers, he is mostly immobile). But his cognitive wit, his innate positivity, and his unique grin, all seem to be returning.

My determination to spend most of every day with Ants, usually sitting on the arm of his armchair so I can put my arm around his shoulders, has certainly improved his mood. Not that he is ever in a bad mood anyway; he is one of the most even-tempered people I have ever known, but I now wonder if the regularity of my visits and the habitual things I do/say on arrival are making him happier. Another factor is that my own mother visits Anthony when and if I can’t get there and that, too, is a regular occurrence.

Currently, this is the pattern of our exchanges:

Me (entering his room at 11amish): DARLING!

Anthony (slow smile): It’s you.

Me: Move over so I can sit next to you – hurry up!

Anthony: You need to brush your hair (he always says this!)

Me: You always say that – shut up! Maybe I should get the haircut you’ve just had?

Anthony: The hairdresser kidnapped me.

Me: Well it looks good, Ants – very distinguished! Okay so let’s put our show on before lunch arrives.

Anthony: Don’t you have to go to work?

Me: Not today.

Anthony: So how much money is in the bank? (He always says this too).

Me: Stop worrying about money – there’s plenty – tens of thousands, and that’s all thanks to you!

Anthony: I love you so much, Jules.

I am beginning to think that this daily banter, the habit of watching a show, eating lunch together, regular visits from my ma and other relatives and friends, might be the reason this amazing husband of mine seems to be improving!

Anyway, I suppose I should stop wondering about all of the whys of this weird and wonderful experience and just be grateful.

blogging Family Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia Western Australia Wings

55 Comments »
Jun 29

Sundown

by jmgoyder

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.

IMG_4596

Australia blogging bullying Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage My published writing nursing homes Parkinson's disease Parkinson's disease dementia Western Australia

37 Comments »
Jun 25

Dina

by jmgoyder

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.

IMG_1451_2

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.

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

37 Comments »
Jun 16

Hugs

by jmgoyder

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.

blogging Embarrassing moments Family Friendship Grief Happiness Humour joy LOVE STORY Marriage nursing homes Parkinson's disease Parkinson's disease dementia

26 Comments »
Jun 7

Paperwork phobia

by jmgoyder

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 ….

blogging Embarrassing moments Family Friendship Happiness Humour joy LOVE STORY Marriage Parkinson's disease Parkinson's disease dementia Wings

26 Comments »
«Older Entries
Newer Entries »
Blog at WordPress.com.