jmgoyder

wings and things

Jul 9

The beautiful dream

by jmgoyder

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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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.

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Jun 19

These boots were made for walking ….

by jmgoyder

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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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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.

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Jun 14

Still Anthony

by jmgoyder

A couple of years ago I read Lisa Genova’s novel, Still Alice and, over the last couple of days, Anthony and I watched the movie. For those who haven’t seen or read the story, Still Alice is about how a linguistics professor, Alice, is diagnosed with early onset Alzheimer’s disease at the age of 50 and how she and the family cope.

I suppose it was a strange choice of film to watch with a husband who has Parkinson’s disease dementia (and was probably a contributing factor in the grief I felt the other evening). But yesterday, as he and I watched the final scenes, he suddenly became quite engaged in Alice’s deterioration, and asked me what was wrong with her. I keep the dvd controller close so I can pause whatever we are watching whenever Anthony says anything.

Me: She has Alzheimer’s disease.
Anthony: It’s worse now, isn’t it.
Me: Yes.

I had paused the film at a particularly stark close-up of Alice’s confused expression (Julianne Moore is brilliant as the character Alice). Anthony and I both looked at her face for a few moments then I hit the play button again and we watched silently as the movie came to an end.

Unlike Alice, Anthony has not had to experience the creeping horror of knowing he has dementia. He still doesn’t know and I don’t tell him because I don’t want him to be afraid or embarrassed. So, when he asks where his mother is, or how she is (this is a frequent question) I just say that she is fine.

Anthony: Is she at home?
Me: Yes.
Anthony: Is Ming there too?
Me: Yes, and they’re both fine.
Anthony: So when are we going to Golden Valley?
Me: When the weather gets warmer, Ants. It’s too cold today.

Anthony’s mother died over 30 years ago and Golden Valley was his childhood home so the only ‘real’ aspect to these conversations is Ming.

I’ve recovered from my grief episode of the other evening and, since watching Still Alice, realise how lucky we are that Anthony has never had to go through that fear-of-dementia experience because it has just happened, insidiously, slowly, kindly even. He doesn’t know he has dementia; he still recognises all of us; there is still a lot of laughter and Anthony’s one-liners are hilarious.

Anthony: You need to brush your hair.
Me: I just did!
Anthony: Do it again, it’s not right.
Me: I’ll shave your head if you keep hassling me!
Anthony: Feisty!

Still Anthony.

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Jun 4

The enormous power of humour

by jmgoyder

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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May 30

Today

by jmgoyder

Okay so I’ve been reading Tolle and trying to do all of that ‘being in the now’ stuff and I think I have a better handle on things.

In dementia there seems to be an unhappening; today is simply today, this minute, second, moment is just that. Memories are painful and confusing and the future is bleak. Now becomes all-important.

So today I visited my friends in the dementia cottage with a completely different attitude. As an ex-staff member I felt the wonderful freedom of just being a visitor!

I did a whole lot of hugging today.

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May 30

Confusion

by jmgoyder

Yesterday, a nurse and her husband visited the nursing home with their beautiful newborn in his pram. I bumped into them in the hallway outside Anthony’s room and was absolutely thrilled to see this beautiful baby and asked them if they could wheel the pram into Anthony’s room so he could see the baby. Of course they were delighted to do so.

But then everything went wonky. For the entire afternoon, Anthony was distressed about the baby.

Anthony: We already have one; we don’t need another baby.

Me: He isn’t our baby, Ants! They just wanted to show him off to you!

Anthony: Where’s the baby?

Me: He’s gone home with his parents; he isn’t our baby, Ants!

Anthony: I’m worried about our baby.

Me: Please, Anthony, he is not our baby; they were just visiting!

I was with Ants for the whole afternoon and, every time he woke up from dozing, he became anxious about the baby. I have never seen him this confused before so I guess we are entering a new phase.

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Apr 29

The party

by jmgoyder

Last Saturday I invited a wonderful friend, Mike, who has done the painting in this house over many decades, for drinks at the nursing home at 3pm and my lovely friend, Mel, and her daughter, Emily, also joined us.

Of course it wasn’t the sort of party we might have had years ago when Anthony’s mother was alive, where the drinks were over flowing and the nibbles plentiful: champagne, pink gins, cinzano, cocktail sausages, oysters, assorted cheeses, pate, and other savouries. Neither was it the sort of party we had in Anthony’s pre-marriage-to-me bachelor days: lots of beer, roast chicken, steak on the barbecue, and, seasonally, crayfish.

It was a much simpler affair with just the five of us and the unexpected addition of a nephew from Perth, but this small number of people easily fills Anthony’s nursing home room and seems like a crowd. Also, despite the fact that none of us could drink much (or anything at all) due to having to drive home, and my bowl of almonds wasn’t popular, the open bottle of red wine, the wine glasses that I had ready, and a few bottles of warm beer, simulated a real party-of-old. We were all quite lively and attentive to Anthony and, thinking about it now, it wouldn’t have worked with any more people because it would have been too overwhelming for him.

After everyone left and Ants and I were talking about how lovely the occasion had been, I felt I’d hit on a great idea for the future. I could invite a handful of his many friends for the same kind of party every now and then; I might even be able to get a few of his friends and relatives that are a bit nervous of the nursing home to come along. Yes! I need to take the initiative here and do a bit of old-fashioned planning and inviting.

The next day, Mike emailed me this message:

Hey Julie, just a thank you for yesterday at the nursing home with Anthony.
I was happy to see Ants in a great frame of mind he is looking so well as to when I last saw him. I was laughing to myself all the way home with his comments to me when i told him that he waited until he was 55 then got married at 57, and he replied ” you’re an arsehole” he definitely hasn’t lost his sense of humour. I thought he was extremely bright also yesterday.

I’m thinking that the nursing home has done him the world of difference in knowing that he is being looked after so well in his stage of life with old age and all that goes with it.

Sadly yes he would still like to be home with his Julie and Ming on the farm but that is not possible now. We all realize that he is in the best possible care .

Family and friends can still get to visit him there for however long they have time to spend with him so long as it doesn’t tire him out, I noticed yesterday that he does tire out.

I will come see him again soon to stir him up or he to me.

It was good to see you again you are looking bright again since I last saw you on the farm the afternoon you brought Anthony out for afternoon visit.

Today, it was very easy to conjure Anthony’s newfound smile by reminding him of the party. This was our conversation:

Me: Wasn’t it great to see Mike again!
Ants: The food wasn’t good.
Me: Okay, so what do you want next time?
Ants: Hors d’oeuvres, you know, the ones ….
Me: That your mum used to make – yes I get that!
Ants: Is she all right?
Me: Who, Mel?
Ants: No, Mum.
Me: She’s fine, Ants.

Thanks so much, Mike, Mel, Em, and nephew Michael for being part of last Saturdays party!

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Apr 24

Cold, hot, not sure

by jmgoyder

I had a leisurely afternoon with Anthony, watching two episodes of Borgen (the Danish political television series), which he enjoys me enjoying. He was cold as usual, so I did what has become a bit of a winter ritual now: rug on knees, foot rub, heat bag on hands, eyebrow grooming (another story!) Oh yes and I put the heater on.

Being cold has become a constant theme in our conversations:

Me: Are you warm enough?
Ants: No!
Me: Do you want a blanket on your knees?
Ants: Good idea. But can you light the fire?
Me: Good idea.

I reach up to turn the air conditioner on and heat gradually fills the room but it’s invisible heat; he wants to see the fire burning – real logs, real sparks, a real fireplace, our living room, his worn armchair. He doesn’t realise that I am missing all of this too. Ming and I haven’t lit a fire in the living room fire-place since Ants moved into the nursing home.

Halfway through a particularly interesting scene in Borgen, Anthony rummages around inside his knee rug and finds a hand which he gives to me as proof that he is freezing. Bloody hell – he IS freezing!

So I take this 2-kilo heat pack, that a lovely friend gave us ages ago, and heat it up in the microwave of the adjacent kitchen and bring it back.

As soon as Anthony sees my irritated face, he begins to smile. I thrust the heat bag into his lap and put his hands underneath it.

Ants: This is too heavy.
Me: Don’t be such a wimp!
Ants: Jules, please.
Me: Argh – okay, here is the heat bag and here are your hands on top of it! Can we get back to the show?
Ants: Could you just put the cold onto the icebox heater?
Me: What?
Ants: There’s a blister on the floor, a cow.
Me: You’re hallucinating, Ants, you know that don’t you?
Ants: Only if you’re here.
Me: I love you.
Ants: (watching the news channel on TV)
Me: I said ‘I love you’ – aren’t you going to say it back?

I am about to leave, but I rush back into his room and frighten the hell out of him by pretending to leap onto his lap the way Ming did when he was little.

Ants: I love you!
Me: Are you warm enough?
Ants: Yes!

I get home and contemplate lighting a fire in the fireplace but, instead, put a jumper on.

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