jmgoyder

wings and things

The beautiful dream

I have different versions of the same dream about once a week (I mean a sleeping dream, not a goal-ridden dream).

Okay, so, in the dream, Anthony and I, and sometimes Ming, have travelled a few hours from home to reach a destination that is either a wedding, or a party, or something like that.

We arrive and check into a beautiful room and while Anthony checks if the TV is working, I go to check out the bathroom and am suddenly jolted with hot/cold shock.

I have forgotten to bring his pills! These Parkinson’s disease pills need to be taken every few hours and at exact times and, if not, he will be paralysed, unable to walk, function normally, speak properly etc.

In the next bit of the dream, Ants and I are in a big room full of all of our wonderful friends and relatives and Anthony is lagging and very tired. I see that I need to get him up to our room and to bed and someone brings a walker or a wheelchair. I am panicked that I don’t have the pills to get Anthony mobile and I ask everyone to help me get him into the car so I can take him back to the farm where the pills are.

Then, all of a sudden, Anthony stands up, walks, laughs loudly, brushes off everybody’s worries and he and I go to our room. Then he and I go to bed, blanket ourselves in sleep until I wake up and panic because it’s 7am and he needs his PD pills!

But he is okay! In all of the different versions of this recurring dream, Anthony is always okay and we both laugh about how silly we were to panic about the pills.

And then I wake up.

It’s a beautiful dream.

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Photos

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I have now brought almost all of the photos from this house (in frames, albums, and boxes) into Anthony’s room at the nursing home, to sort through. I began to scan some of these about a year ago but then lost the impetus. Well, the impetus is back! It will be so great to scan photos into my computer and get rid of the bulk!

A few photos, taken recently, will take precedence in a possible photo book. Thanks, Ashtyn and Gordon, for letting us hold your beautiful baby boy!

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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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“Illness separated”

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Yesterday I went to see the people who help people like me to access employment and/or volunteer opportunities. I thought it was about time I got out of my lady-of-leisure mode since resigning from my job at the nursing home several weeks ago.

The woman I spoke to (I will call her Sue) pulled up my records and I misheard her saying that Anthony and I were separated.

Me: No, no, we aren’t separated!
Sue: Illness separated?
Me: Oh, yes, I see. He’s in a nursing home.

Anyway, Sue was very helpful and asked me to come back today with various bits of paperwork that would help to get me back ‘into the system’.

Even though the phrase “illness separated” isn’t new to me, I hadn’t heard it for a long time so it shook me up a bit. Of course there is no other way to describe our situation in terms of the red tape but it still sounds weird, especially the “separated” bit. Oh well.

The views from Anthony’s nursing home window sometimes look uncannily like home and yesterday he ‘saw’ his nephew milking the cows outside and wanted to help. I looked out the window and tried to see what he was seeing (his hallucinations are, thankfully, happy ones mostly).

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Me: It’s okay, Ants, he’s just about finished milking.
Anthony: What about the fences?
Me: Ming’s taking care of all that.
Anthony: How much money do we have in the bank?
Me: Lots, thousands!
Anthony: Okay.

I think we might fall into the category of “illness inseparable” now but that wouldn’t tick the boxes ha!

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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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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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The enormous power of humour

There are all sort of theories out there that encourage people to combat their despair, depression, and personal tragedies, with positive strategies and tips. Many of these theories and tips are extremely helpful. In fact there are probably more resources now than ever before and it can be a confusing array for someone who is in despair. Nevertheless, despair is despair is despair and I have found, within my own ongoing situation with Anthony’s Parkinson’s disease and other situations (which we all have), that accepting these moments of despair is much more useful than trying to frolic them away on the back of platitudinous clouds. Clouds wouldn’t be clouds if they were constantly shot through with those over-heated parasites of despair. Don’t get me wrong; I am not in despair but it does have a habit of visiting me unexpectedly from time to time and last week it became such a pest that I had to politely ask it to leave. And, hey presto – whatever that means – it was gone! Okay I have my nouns, verbs and metaphors a bit mixed up but what the hell; I don’t teach at the university any more so, as far as I’m concerned, my sentences can do what they want. And the point of this post? The enormous power of humour. Ming, Ants, Meg and I watched our favourite comedy series this week and, even though Anthony’s ability to laugh loudly like he used to, has gone, there were a lot of smiles. The despair left the room with its tail between its legs and, next time it decides to pay a visit I will be armed and ready – with laughter! There is so much more I could say about this but I will save it for another post because it can be quite exhausting laughing despair away!

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