jmgoyder

wings and things

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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YES

YES?

It was because we were friends first – you my ‘big brother’ at 40ish and me a kid at 17. Is this why I continue to need to be close to you for most of every day now?

I ADORED YOU, so much so that your mother noticed and winked and encouraged, but you were too respectful, and I was too innocent. When you take my hand now, you smudge it into yours. My hands are small and yours are large but, when we have an arm wrestle, I have to pretend to be weak.

I remember how you gentled a more vivid blush into my cheeks than usual, when, for the first time, you took my hand and dragged me outside to see the once-a-year bloom of the moon-flowers. Now, contrary to your theory, the moon-flowers bloom haphazardly, unpredictably, and more than once a year.

Today, you couldn’t form words, so you were mostly incoherent, and totally confused and it was a bit of a struggle for me, but my presence helped, I guess – and when you seemed to be asking me something with your sliced up words, I just kept saying yes and you were okay with that.

YES.

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When three is a crowd

Okay, that whole three is a crowd thing is not always the case, but, when it comes to Ming, Ants and me together now,
it
just
doesn’t
work!

There are lots of reasons for this, of course, where generational differences are made stark and raw and plain:

Ming: Mum, stop answering for Dad; let him talk!
Me: Why do you have to be so angry with me all the time!
Anthony: Stop it, you two.
Ming: He’s dribbling.
Me: (whispering) Shut up, Ming and stop embarrassing him!
Ming:(shouting) Dad, stick your tongue back in your mouth!
Anthony: (sarcastically sticking his tongue out then into his mouth) That better?

Now, the misery of this kind of three-pronged visit has been alleviated by the fact that Ming now has his own wheels again and can visit Anthony without me (as he did today and will do tomorrow because I have a cold). It is a relief to know that my absence for a couple of days is probably forgotten in the wake of Ming’s enormity of presence in Anthony’s life, mostly hallucinated or remembered but now, once again, real.

There are so many reasons why a now-20-year-old son, adored always by his mother and father, might get a little tired of the adoration at some stage and then, when the father began to get disease after disease, miss the adoration, and maybe feel a bit lost in the mayhem of his parents’ anxiety, his mother’s exhaustion, his father’s demise from workaholic dairy farmer (when Ming was born) to Parkinson’s disease patient in nursing home.

Ming starts his full-time job at the restaurant and said he will visit Ants after he knocks off tomorrow, so I can have a second day in bed, reading my book and getting over my cold.

I guess Ming and Ants have a relationship that works better if I am absent. Amen.

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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!

31 Comments »

Simulating home

photo (1)

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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photo (6)

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!

weights

weights 2

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.

photo (2)

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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Blogging update

I’m gradually (and unguiltily!) getting back to reading, and commenting on, other people’s blogs, and re-subscribing to those I have lost touch with. Like many other bloggers, I feel such gratitude for the community of friends I’ve connected with over the last three years. The fact that I can’t consistently keep up with everyone’s posts no longer bothers me and it is quite a relief to dip in and read when I can, comment if I want to, and not read any blogs if the day is too busy. Having said that, I am very appreciative of those friends who continue to give me their support and friendship. It has been an extremely difficult year for my family, but things are finally returning to normal, whatever that is.

Perhaps my blog-reading will, from now on, resemble the unpredictability of Ming hanging out the washing!

photo (6)

The expression on Ming’s face here is exactly the same as when he sees his name in one of my blog posts – ha!

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Always check the weather forecast before waxing lyrical about the sunrise!

This morning I was awoken at 5 by my alarm and the sound of pouring rain and ferocious wind. I peeked out the window into the misty grey but couldn’t see any sign of the sunrise. So I went back to bed!

Today is Father’s Day so Ming and I went into the nursing home before lunch with our presents. Mine was a dozen oysters (which I picked up from the markets on the way in) and the DVD cooking series, Two Fat Ladies, which Anthony, Ming and I used to love watching. Ming’s gift was the English series, Doc Martin, and a bottle of champagne.

The oysters were a great hit:

photo (3)
photo (2)
unnamed

Anthony finished the whole lot in about two minutes!

My mother came in after church and helped us snack on crackers and some special cheeses I’d bought, with olives, cherry tomatoes and baby cucumber, then Ming arrived and gave Anthony the presents which were also a hit. A bit later, we played some of the DVDs and cracked the champagne but Ants only had a couple of sips before falling asleep in his chair. My mother had gone home by then and eventually Ming left.

After that, I tidied and washed up the various plates and cutlery I keep in one of Anthony’s cupboards, then sat down to watch another episode of Two Fat Ladies with him, but he continued to sleep and, all of a sudden, I felt terribly flat and just wanted to come home to Ming, so I did. But Ming has now retired to his shed for the night and I am coming to terms with the fact that I am somewhat redundant in his life – perfectly normal of course but still hard.

When Anthony wakes up will he wonder where I am after the frivolity of this morning? I told his favourite nurse, Denise, that this is the first time I have left without saying goodbye but I didn’t want to wake him as he looked so peaceful, so she said she would tell him.

All of a sudden, even though he has been on my mind all day, I am consumed by the remembered agony of losing my father suddenly to a heart attack when I was nineteen and my younger brothers were seventeen and fifteen. Those brothers have become the most amazing dads to their children (five each!) I bet they think, with my mother, of our Dad today. He was a generous, beautiful gentleman.

img161

Anyway, back to the sunrise fiasco – I am just going to check the weather forecast for tomorrow ….

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Reunion

I have decided that it is way too long since I have met up with someone who I used to be closer to, but have lost touch with. This is entirely my fault, as she is always there, no matter what.

Tomorrow, my plan is to surprise her; my alarm is set for 5am so that I can catch a few moments with her before she goes on her daily journey. I hope she will remember me and the good times we used to have. I hope she will say yes to me when I ask if we can be friends again.

Her name is sunrise.

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