jmgoyder

wings and things

Flowers, food and fun

Flowers:
It is so interesting that the avocado tree has unreachable fruit at its top, but is blossoming down below. The very last edible avocado is in the refrigerator, ready to take to Ants tomorrow (he loves them!)

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I’d been bringing various camellias, roses and even bottle brush into the nursing home but the other day I thought I may as well tear off a whole branch of avocado blossoms and arrange them in Ants’ room. This whole flower thing is kind of weird because I really don’t have a clue about this garden Anthony established all those decades ago and have only begun to take a bit of an interest now because, well, why not! Also, every time I bring Ants flowers he gets a thrill out of it. I found two stray roses yesterday and their scent was fantastic.

Food:
Ages ago, I began taking an interest in cooking more interestingly, partly in order to be able to provide Ants with cakey stuff (he has a sweet tooth), partly in order to provide Ming with sustenance (he has a fussy tooth) and, more recently, because I have become fascinated by, and dedicated to, preparing food from scratch. It’s really time-consuming to chop or grind the herbs, roots, chilis etc. but what a great feeling/taste, and how nostalgic it makes me for my early days on this farm when Gar (Anthony’s mother) would point me in the right direction of the flour tin with her walking stick; teach me how to make white sauce; show me (with Anthony’s help – probably our first vaguely romantic moment!) how to pluck a duck and prepare for roasting.

Okay so my latest food discovery is stone-age bread. I just typed this into google out of curiosity and was a bit surprised to find there were already so many recipes. I tried the first one and bingo – beautiful! I would have taken a photo of my own successful loaf of bread but I’ve already eaten it! I will refine the recipe and post soon (yeah, I can hear the non-sighs of anticipation ha!)

Fun:
Before Anthony became so ill with Parkinson’s disease etc., we had a relationship that was full of banter, teasing, laughter, fun. Some of the fun stuff was simply giving cheek so, today, when Ants tried to say something to me in his newishly quiet, croaky, soft voice, I took him by the shoulders (gently!) and said “SPEAK UP, ANTS, CLEAR YOUR THROAT, STOP BEING SO FEEBLE!” Then I punched him lightly in the shoulder and, yeeha! I was the recipient of one of his gradual, wonderful smiles – kind of like sunrise in the mist, bit by bit by bit.

[Note to other bloggers: I hope you know I am reading your posts but just no time atm to comment etc. x]

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Gutsy 9 – my fantastic bird-in-hand

For those who don’t know, G9 is a peachick who, for some reason (maybe because she was half blue/half white) was abandoned by whoever hatched her. I caught her as she was scuttling, terrified, into the old dairy and pretty much raised her with the hands of Ants and Ming.

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Today, I decided that I would come home earlier than usual from the nursing home. I told Ants I had to go and feed the birds and dogs, and then said I would see him later.

Ants: You won’t come back.
Me: What do you mean? I always come back!
Ants: Not, yes, what car?
Me: Our car, silly!
Ants: How many calves? I need those people for the fireplace
Me: Only ten left to feed. Ming will do it. I know who you mean for the fireplace.
Ants: Are you sure?
Me: Yes, should we ring tomorrow?
Ants: You do it – something is wrong with me.

When I got home, I went straight out to find Gutsy and, as usual, she was waiting for me:

I’d like a word, Julie

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You’re always out and about and I feel ….

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Oh I think I’m going to cry – how embarrassing!

G9!

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Opposites

Today I spoke to a fairly new resident in Anthony’s nursing home, Meri. She is in a motorized wheelchair with stroke-like symptoms, but is totally lucid. On her first day, I could see a mixture of grief and determination in her expression when I just said hello. Today she told me that she is adapting but her husband keeps ringing her and telling her that he feels lonely and abandoned.

I couldn’t quite compute this until I realized that it must have been Meri’s decision to go into the nursing home in order to save her husband from the burden of care. I told her that for the first year of our own nursing home experience, Anthony and I had a continuous dialogue, sometimes painful, sometimes gentle, until we both accepted the situation.

Meri and I are going to be good friends, I hope. We have a lot in common in opposite ways.

[PS. all names are always altered for privacy]

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“Is that you?”

Today, when I arrived at the nursing home just before lunch, it was a bit like the five seconds of yesterday but this time Anthony said, “Is that you?” as if he couldn’t quite believe his eyes. I think we have now fallen into a new phase of Parkinson’s but then again Ants might just be having a bad week.

I am still surprised at how gleefully I go in every day and I’ve been trying to disentangle the complexities of why this is because it’s only a relatively recent phenomenon and I’m not quite sure what flicked the switch from the dutiful dread of a few months ago to the anticipation of now. The sense of purpose, routine, satisfaction and joy I feel now is wonderful but also a bit disconcerting!

The volunteering situation has been absolute magic. Today, Nat, Edna, Beatrice, Ants and I sat around the dining room tables after lunch was over and played Nat’s version of ‘Memory’. Edna is just in for respite – her first time – and she told us yesterday (during a similar game) that she had been extremely nervous but since meeting Nat, relaxed a bit and now they are like old friends!

So we played and here are some smatters of conversation during that hour and a half of laughter.

Nat: Tonyyyyyyy (speaking to Ants) Come on, darling, turn your cards over.
Edna: Don’t let her boss you around, Tony.
LAUGHTER
Me: Ants, turn two cards over and hope for a match.
Ants: Jules?
Me: Pick up two cards – here I’ll help you.
Nat: My turn.
Me: No it’s not, it’s my turn!
LAUGHTER
Nat: Cheeky bugger.
Me: I heard that, Nat!
LAUGHTER
Edna: Is she cheating again?
Me: Well, even though she is a really beautiful person, I did see her put a card on her lap.
Nat: I never did!
Me: (sneaking around the table to snatch the card) AHA!
HYSTERICAL LAUGHTER FROM NAT AND EDNA AND ME – ANTHONY BEMUSED
Nat: Tonyyyyyy, help me!

I can’t count how many times I’ve played Nat’s version of ‘Memory’ now, but it has become quite popular with other residents too. The best thing about it is Nat’s contagious laugh and her mischief; the best/worst part is Nat wanting Ants to join in, and the worst part is Ants unable to engage very well. Plus, Nat and Edna are nearly blind so this makes for a very sloooooow game and Nat alternates from saying “This is the most fun I’ve ever had in meee life!” to “This is the longest game I’ve ever played!”

Today, we were all exhausted, especially Anthony who often chooses not to join in or else is so peacefully asleep in his armchair that I don’t rouse him. I just leave my stuff (scarf, handbag, book) next to him so that when he wakes up he’ll know I’m still around and not gone.

I help Ants with his tea now because this is a busy time for the staff and why not? He is pretty exhausted and PDish by then so I say my ‘seeyalater’ and am usually home by 6pm.

Tonight, as I left, I kissed Anthony on the forehead and he tried to speak but even the single syllable he uttered was impossible to interpret. He could no more say “I love you” than “Is that you?”

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Five seconds

Today, I experienced, for the first time, five seconds of what I always knew was inevitable. For five seconds (and I know it was exactly five seconds because I kissed Anthony five times – three on the nose and two on the forehead – all in quick succession, to remind him….)

Ants!
It’s me – Jules!
Ants!

A syllable for each peck of a second.

This is the first time Anthony hasn’t recognized me and, even though it was only five seconds, it is good to have had that little taste of forewarning/arming because I still have time to develop some tactics and hopefully some wisdom.

When I told my mother about the five seconds of unrecognition (yes, ‘unrecognition’ is a word – I checked) she squeezed my hand but I quickly reassured her that I was fine with this first of what will be many unrecognitions. (It’s kind of weird being comforted by your 79-year-old mother about your 78-year-old husband!)

In what I think will be the near future, the challenge for me will be in how to reassure Anthony that I am indeed Jules, his wife, without embarrassing him. I know this because lately he asks a lot for his mother and many others of his family who are now deceased. Sometimes I say they are all well but very busy but sometimes (for example if he is distressed, as he was for his mother again the other night), I will gently remind him that she is gone.

I was thrilled today to have a conversation with a friend of mine, Ann, who now works as a clinical instructor at the nursing home (she and I both left our jobs at the university at around the same time). Ann told me that she has been showing all staff, including domestic staff, a DVD about Parkinson’s disease that explains, among other things, why someone with PD can sometimes walk, and other times be totally unable in which case encouraging words are useless. Interestingly, the DVD also explains why a person with PD may not respond to a greeting, and therefore appear to be unfriendly. Ann told me that she pointed out to the staff that people with PD need time to process the greeting and should, instead of rushing past with a “Hi Anthony!” and disappearing, wait for his response.

After all, it only takes around five seconds for Anthony to say “hi” back.

On the other hand it only took one second for Anthony to say “Rubbish! Throw it out the window” about the cupcakes I made for him last week!

The kiss Yes, I know I’ve posted this photo before but I love it!

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Resilience

I used to miss the Anthony of the past terribly – the robust, energetic, boisterous, fun-loving Anthony with the loud laugh – and I still do of course. But lately, I’ve begun to realize that I also miss (and much more-so) the Anthony of now, the Anthony who still IS. In our mutual acceptance of the way things are now – his Parkinson’s disease, the nursing home, our forced “illness separation”, and even the increasing confusion and hallucinations that accompany his dementia, I now find myself anticipating my daily visits to the nursing home with what would, months ago, have seemed an impossible excitement.

The strange thing is that the feeling of obligation to visit Anthony for his sake, has been subsumed under a desire to visit him for my sake. The contentment of these long afternoons together, punctuated here and there by volunteer work, is something I never expected to happen. Okay, so boredom, apathy and fatigue are definitely risk factors here but I’m learning how to counteract the former two by coming up with new ideas whenever something begins to become tedious (like watching episodes of Neighbours!) The latter – fatigue – has been solved by this sudden flu which means I’ve been lolling on my bed for three days reading novels and resting, not allowed to go to the nursing home in case I’m contagious. So Ming and my mother have been visiting Anthony – wonderful creatures they are!

But I miss him so much! I have become so accustomed to these afternoons, this routine – the joy of his smile at the sight of freshly picked camellias (and me), playing the card game “Memory” with him and other residents, eating olives and blue cheese with him, or giving him a piece of my latest cake, helping him with his lunch and sometimes dinner too, watching television or a dvd, combing his hair with the metal comb he always loved that I only just found (and he is thrilled!) And so on. Tiny morsels of pleasure, once overlooked, now savored, now treasured. I have never looked at a camellia the way I do now – never! I have never noticed so acutely the beauty of a white peacock feather nestled in the arms of an avocado tree’s blossoms, a tree that is still providing us with plenty of fruit!

I don’t want to sound soppy and sentimental and goopy, but I do think Anthony and I have been extraordinarily fortunate to have found such a mighty love and I sometimes wonder whether this is why we are both now coping so well with what IS. Actually no, it’s not coping, accepting, persevering, or any other stolid adjective. Instead, a wonderfully weird happiness.

Resilience: Anthony has always had this and now it is as if he has gifted it to me.

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Mischief

Anthony: I’m in constant pain.

Me: What? Since when? Where is the pain? Oh my God, I’m so sorry, Ants – you never told me this before!

Anthony: Oh, these things (stretching his arms out), and these other instruments (stretching his legs out in a rather swaggery way).

Me: What kind of pain is it?

Anthony: Agony.

Me: Well why the hell didn’t you tell me this before? I’ll ring the doctor! For God’s sake, Ants, I’ve been telling everyone for ages now that the best thing about your situation is that you are not in physical pain, and now you tell me this!

Anthony: Um… (beginning to do his half-smile)….

Me: So you are kidding? Joking?

Anthony: Just stirring you up, Jules

Me: You want pain? I’ll give you pain! (We have an arm wrestle on the side of his armchair and I win.)

He is so tired that his eyes weep; my laughter is raucous and I apologize but he says he loves my cackle; I leave to come home and he says, unsadly, see you tomorrow.

If Anthony were in physical pain, we would not be able to cope the way we are coping now.

And if Anthony didn’t have his mischievous sense of humor, everything would be horrible. Okay, so everything isn’t wonderful but it is definitely not horrible with Ants in the picture.

(I have learned how to make chili hot chocolate, which Anthony loves, so I might put an extra chili into the mix tomorrow – ha!)

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Early to bed, early to rise!

Obviously it is much easier to get up early in the spring than it is in the winter so today I was able to get a lot more jobs done (just the usual domestic duties of washing and folding and tidying and cleaning that overwhelmed me a bit a couple of months ago) before going into the nursing home.

Today I arrived at 11am and found Anthony sitting outside in the sun. I managed to get him into a wheelchair and we went for a walk down to the beach. I tried this the other day but it was too windy and he feels the cold terribly, so we turned back prematurely. Today we went a bit further so, halfway back (which is uphill), I had to stop and take a rest.

Ants: Do you want me to take over?
Me: And how, exactly, will that work?
Ants: I can help you push me.

Yeah, right – grrr!

Sometimes Anthony sort of disembodies himself and will kiss his own hand, thinking it’s mine, or else turn to the left to speak to me, when I am sitting on the right. His room has a view of a lovely lawn and garden and he will often point out, proudly, that Ming is doing a great job with the calves.

I find it fascinating, and admirable of course, that Anthony keeps wanting to climb out of his illness, and incapacity, in order to help. Once we’d returned to his room from our walk today – him shivering with cold and me drenched in perspiration – one of the nurses came in to give Anthony a pill and had a bit of a rant about the staff she was working with.

Nurse: They’re so useless!
Anthony: We can help you (trying to get up).

Now that I am a volunteer, I have a bit more insight into ‘how it is’ for both residents and staff. Anthony is in the ‘high care’ section for people with mobility problems. In the ‘dementia’ section, where I help out with various activities on the weekends, most of the ten female residents are extremely mobile (we go for walks around the grounds!) but terribly confused. I have taken a liking to all of the women but especially Beatrice who is, at nearly 90, physically fit, beautifully groomed and who carries her handbag with her always. Before I volunteered, I would exchange greetings with these women and the carers and Beatrice seemed the happiest. But now that I know her better, I realize that her bright smile is due to the fact that soon her husband will be picking her up and she is always ready and, unfortunately, always extremely anxious. Her husband must have died years ago.

I am, of course, drawn, emotionally, to this nursing home where Anthony is, but I have also become involved in other residents’ lives, so much so that we have become friends. Even with dementia, where you have to introduce yourself over and over again, the friendship-feeling is solid and ongoing.

I’m extremely grateful to be able to do this volunteering at Anthony’s nursing home because it allows me to come and go from his room as if I were just going to hang out the washing, or cook tea, or make coffee – again, a simulation of sorts.

It is now six weeks since I began volunteering and a further six weeks (I think – will have to check) since bring Ants home. If, indeed, it has been this long since I brought Anthony home, then hopefully he will no longer pine for home and beg to come home – a situation that forces me to become stern and admit to him that I can no longer lift/manage him at home. His response is usually dignified but occasionally he accuses me of being unfair.

For the last couple of days I have been feeling a bit exhausted (not because of Anthony!) and I hate this feeling so maybe getting up earlier is the answer to that – yes! I have to tomorrow anyway so I can meet Dr Nathalie Collins (see previous post) for breakfast!

All of those years that Anthony got up before 5am to milk the cows, like so many dairy farmers still do – my hat is off to them – heroes in so many ways!

As for me, 6am is okay – zzzzzzzzzzzzzzz!

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‘Phinished’

My fantastic friend, Dr Nathalie Collins, at her graduation the other day!

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Ever since I met Nathalie, she has been either a breath of fresh air, or a ferocious wind. She talks a lot but she also listens. She can transform anything to anything with her wit and wisdom.

Dr Nathalie Collins is an incredibly skilled philosopher, so watch this space!

Congratulations, Nat!!!

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Simulating home

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As you can see we are still experiencing a wintry spring after its false start last week. The weather alerts for Western Australia are a bit alarming with winds of up to 100 kph so I came home a bit early from the nursing home yesterday.

I have begun to arrive at the nursing home by 11am most days now because, with the volunteering, I need plenty of time to wear both ‘hats’. It is working out so well but more about that in another post.

Over the two and a half years since Anthony entered the nursing home, his room has become as close as I can get it to our real home: freshly picked flowers (although I never did this when Anthony lived at home – he did!); daily food treats on plates and a cutting board I keep there; familiar shows on television via the DVD; a well-stocked bar and our own glassware and so on.

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And (my latest idea!) Ming’s 2.5 kg weights. I didn’t expect Anthony to be quite so enthusiastic about this but I was wrong – he did around 20 for each arm with me cheering him on and cracking up laughing at the same time!

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Despite my intention to take Jack, our Irish terrier, in to see Ants, I couldn’t find either his leash or collar that day so I will probably take Blaze instead for the time being.

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Even I am beginning to feel more at home at the nursing home than I am at home, which is really weird! Well, at the moment, it is a lot warmer there.

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