jmgoyder

wings and things

Facebook friendships

Over the last few months I have become Facebook friends with many of the staff at the nursing home where Anthony lives. Some of the staff have ‘friended’ me and I, too, have actively ‘friended’ others. This means that my blog (which automatically connects to my Facebook) is accessible to the very people who look after Anthony.

This is a little bit scary because I feel like I’ve made myself vulnerable. On the other hand, it is the most wonderful thing to be able to connect with these fantastic carers outside the context of the nursing home. The Facebook connection is virtual, yes, but also very real because I see many of these beautiful people every week and sometimes every day!

I didn’t deliberately plan these Facebook connections; it just kind of evolved and now I feel enthused to connect with as many staff at the nursing home as I can. I want to thank them personally; I want to acknowledge their amazingness; I want to know about their lives, their woes and joys.

I want to hug them back. So, to the staff at Anthony’s nursing home (yes, he thinks he owns it), many many many thanks! I think we can use Facebook to communicate.

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Weird and wonderful

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.

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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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Making friends with dementia

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

In my PhD research and subsequent book about dementia – eons ago – I talked about how, no matter how nonsensical or confusing the person with dementia’s stories were, it was still beneficial to have those conversations, to participate in what I called ‘storying’.

Fast forward to now and working in the dementia cottage has been an absolute gift. I have a job, albeit part-time, in which my role is that of “Lifestyle Assistant”.

Over the last several months, as both a volunteer and employee at the nursing home where Anthony resides, I have become more and more enriched by the relationships I’ve formed with the residents in the dementia cottage. Partly this is due to putting into practice much of what I learned and believed all those years ago when I simultaneously worked as a nurse in a nursing home and embarked on my thesis.

This job has taught me so much, not just about dementia itself and how it affects people differently, but about how vital friendship is to those who have dementia. Common sense really but it is often assumed that if the person with dementia doesn’t recognise you, you may as well not bother visiting, conversing, relating to them. But why? That person with dementia still needs your friendship even if she or he doesn’t know who you are anymore.

On entering the dementia cottage, I am mostly unrecognised as someone any of these ten women have met before (every yesterday has usually been forgotten), but I am still made to feel welcome, and warmly greeted by those who can still speak. The first thing I have begun to do, during my 3-7pm shift, is to greet each of the ten women individually, either with words, or a hug, or a joke, or the offer of a wheelchair walk.

I realised the other day that the reason I love the job so much is simply due to the fact that these women have become my friends, so much so that I have begun to miss seeing them on my days off. Since I only work six four-hour shifts per fortnight, that’s a lot of missing! I love these women (despite the fact that Anthony has often told me that I throw the word “love” around a bit too freely!)

The point is this: my ten friends with dementia may not know who I am, but I know who they are. I’ve read their histories, learned their personalities, and have now figured out which activities individual people most enjoy.

Dementia can be a cruel, debilitating disease which renders the victim helpless in so many ways. People with dementia need friendship but those of us without dementia should consider the possibility that we also need their friendship.

It is inevitable: one of these days, I will rush into Anthony’s room, plonk a kiss on his lips, sit down next to him with a grin, put my arm around his shoulder, and he will not know who I am.

But I will know who he is and, if he asks, I will simply say, “I’m your best friend.”

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Wedding anniversary thoughts

In a couple of days it will be our 23rd wedding anniversary. Over the years, Anthony and I have been hopeless at remembering this and my mother usually reminds me! But, even after being reminded, Ants and I have never done the whole anniversary present thing, just as we have never bothered with the Valentine’s Day thing.

Our love story, in retrospect, is very romantic but we have both been a bit cringy about public displays of affection and have never adhered to expectations around both occasions. In fact, until now, we have never held hands in public. Perhaps, having hidden our romance for so long, when I was younger, and having had such a wonderful platonic relationship beforehand, our friendship didn’t require the usual trappings of romance.

I think that when a romantic relationship begins with a platonic friendship, it is easier to manage the ups and downs of a marriage. I can remember years ago Anthony suggesting that he might one day buy me an emerald ring and silly, young me hoping to get this on my 40th birthday. Instead, he bought me a wonderful lithograph that he had always wanted!

After Anthony experienced my dignified disappointment (“You just bought me something YOU wanted!”) he began buying me silver bangles every Christmas and birthday, picking them out himself during the years before he became too affected by Parkinson’s disease to drive into town. So he began to send me into town to pick whatever silver bangle I wanted, which I did, reluctantly to begin with and unhappy with the thought that I was romancing myself! I eventually quickly began buying my annual bangles at just above Anthony’s budget instructions. It was hilarious to watch his expression when I came home and said, “I’ve found one and I love it, but it’s a bit expensive!”

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Anthony (having always been extremely tight careful with money), would ponder the situation, look at the picture of the bangle, then at my greedy grin, and say, “Yes, okay, Jules.” These were gleeful moments, mischievous and hilarious and as solid as the silver in the bangles.

In light of our current circumstances – Anthony in the nursing home etc. I was tempted to just pretend the whole silver bangle ritual. After all, that’s what I did last Christmas and for my birthday in January. But then tonight I suddenly thought Ants will get a kick out of giving me a new bangle so tomorrow I am going to find one that is really unusual and take it in to get his approval.

Our romance began when I was 23 and now we have been married for 23 years, so I will get the chosen bangle engraved with 23 – yes!

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True love

My young friend found this the other day. It was created by her brother Nick when he and Ming were little.

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Heather

When we first moved to Bunbury, Western Australia, after five years in Canada and three years in Papua New Guinea, we were befriended by two extraordinary families. At the time, I was 15 and my brothers were a bit younger. The way in which our friendship grew with these two families is a very long story and definitely worth telling, but that is not for this post.

This post is about Heather.

Tonight I opened a silver envelope within which was a card from one of my mother’s best friends, Heather, a member of one the above families. Inside the card she had written the most beautiful message to me – a message of comfort and love and with a buoyant positivity (which she apologized for because she is rather famous for her positive attitude that she thinks people don’t always like). Well I like it very much!

Heather was my mentor when I was a teenager struggling with the culture shock of transitioning from PNG to a private school in Bunbury and she, her husband, and her children, helped me to adjust. They were all so kind.

So this is just to say, Heather, that I DO like your positivity and I have drawn such strength from your kindness to me in this card. The fact that you can be bothered to make this gesture, even though you and your family have your own challenges, joys and busyness, amazes me. I didn’t realize it until now but I have always drawn strength from your incredible ability to see the best in people and situations AND your inviolable faith.

Heather’s card was sitting beneath a mountain of bills and letters and all that stuff I loathe doing. Its envelope caught the light, so I picked it up out of the stack of old mail and opened it today. And my heart did one of those somersaulty things with gratitude to have someone like this in my life.

I can’t just thank you, Heather; I salute you. Much love
– Julie

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My friend, Nicola

“Nicola” is a sort of pseudonym for one of my very best friends. The other night, Ming and I were invited to go to her place for drinks but the day got complicated with Anthony home again; unexpected visitors; food shopping; a dreadful hour back at the nursing home in the late afternoon when Ants was almost too paralyzed to get from car to his room despite my help; hurting my stupid back lifting him; Ming getting his bandages wet and me having to peel them off to see a much longer scar/wound than I’d expected, not being able to find the betadine, a rather nasty altercation with the beautiful brat, planning the exciting visit to see my youngest brother, wife and kids the next day and liaising with my mother about this; answering calls on my stupid, non-working, cutting-out phone; getting a headache; and forgetting to put beer in the fridge – argh!

But Nicola was expecting me so, by the time I’d done the bird feeding/watering/yarding, I was kind of ready to go but then Ming and I had another altercation and I ended up yelling at him because the same drugs that were making him all lovey-dovey are now making him monsterish – another argh!

So I rang Nicola and said we couldn’t come (I only told her a bit of the above which is already an abbreviated version of the hell of the day) and she said that it was okay.

I now think that the sentence, “It’s okay” is the best sentence ever invented because it says everything. When someone lets you off the hook of a commitment that you have broken by saying “It’s okay” your whole heart stops holding itself tight and starts beating out a beautiful soft song of gentle understanding and relief.

My reputation for letting people down at the last minute is something that I am not proud of but it stems from the days/years when I was looking after Anthony at home. I became reliably unreliable!

Thanks, Nicola, for your understanding and empathy and amazing friendship. You are a rock!

IT’S OKAY!

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My first commenter

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The first person to comment on my blog (apart from my mother) was Lynda whose blog, Life in the Farmlet (http://pixilatedtoo.wordpress.com/), has entranced me from the start of my blog journey. She likes geese and so do I and that is how our friendship began.

One of the things I have discovered in following Lynda’s blog is that she is a woman of many talents. For example, she is really crafty (in the literal sense) i.e. her sewing abilities far surpass my own inability to sew a button back on a shirt. She is an artist.

Well, guess what? Lynda has sent me a gift! Here is the post in which she describes it:

http://pixilatedtoo.wordpress.com/just-something-i-made/

This apron is so exquisite, I don’t think I can possibly wear it – I want to frame it! I love it!

Lynda, you absolutely shine. Thank you from the bottom and top of my heart!

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A few bloggy questions for those who might know the answers!

1. How come, if I click ‘Follow’ I am sometimes automatically subscribed to a blog and sometimes not?

2. In relation to the above, why is ‘Follow’ enough on some blogs but on others I have to do the email subscription thing (which I don’t mind – just wondering)?

3. Is it normal for photos to sometimes take 20 minutes hours to upload?

4. In relation to the above, why will one photo upload in a few minutes, and another take a century, when both were taken by the same camera, at the same time, on the same day?

5. Where exactly did my blogroll go when I unwittingly lost it?

6. In relation to the above, will those ‘lost’ bloggers now hate my guts?

7. How many posts per day is too many? (Yes, I have raised this before)

8. Is it okay to not particularly like the whole award thing or does this seem ungracious and offensive?

9. How is it that all the bloggers I now know seem like perfect people?

10. In relation to all of the above, is scotch the same as whiskey?

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