jmgoyder

From panic to pause….

by jmgoyder

For the last few months I have spent a lot of days with Ants in his room at the nursing home, just watching dvd series like Downton Abbey; The Bridge etc. Ants loves anything that has an historical slant so this has been a great way of spending time together.

However, some of these movie afternoons are interrupted by staff performing ablutionary tasks, or simply moving Ants from a wheelchair into the easy chair. These interruptions are sometimes difficult and complicated, but Ants is treated with respect and, often, affection. Phew!

If I am there, one of the things I do immediately is to mute the television because I have never forgotten how one of Anthony’s many doctors explained to me that people with PD cannot focus on two things at once. So, if carers are trying to get him to stand up, but the TV is blaring news about the latest ghastly situation, he freezes mid-stride, because all of these sensory experiences are crashing into each other and he cannot focus on walking.

Whenever I get a late-night phone call from the nursing home (not very often thank goodness!) the carer will help Ants to talk to me on his own phone (which he very rarely answers now because he has forgotten how), this is how the conversation goes:

Me: Are you okay, Ants?
Ants: When are you coming to get me?
Me: I’ll be there soon, Ants. I love you and you have to stop panicking. It’s all okay and you are in a nursing home with lots of people looking after you!
Ants: But I just want you. When will you be here, Jules?
Me: I’m on my way, Ants- I love you so much!

A couple of years ago I used to race into town to make sure Ants was okay but, after several times of finding him asleep, I stopped panicking, started pausing, and the whole pause thing has somehow killed all of the panic.

So now, when I feel the panic creeping into my scalp, ankles and elbows, I stop everything that is bothering/torturing me and I just PAUSE!

So, despite the new-agey sound of this, there is a pragmatic outcome I think when you put PANIC on hold in order to Pause, you can get a better perspective. I think!

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I can’t do this until I do that!

by jmgoyder

You know that feeling that you can’t do something you need to do until you do something else first? For example, here are some conversations with myself over the two-and-a-bit years since Anthony went into the nursing home:

– I can’t have people visit until I clean the house from top to bottom;
– I can’t go on a diet until I have eaten all the cheese;
– I can’t sort my old paperwork until I have sorted my new paperwork (well I think I have a point there!)
– I can’t turn over a new leaf until Monday because Monday is a good day to turn over a leaf, or perhaps Sunday if the date is not an odd number (a little bit of OCD?);
– I can’t do the washing (laundry) until I find it;
– I can’t get back in touch with that old friend until I find all of her emails to me that I didn’t answer, and answer them.
– I can’t get a decluttering service to help me until I do some preliminary decluttering by myself (yes, this has worked to some extent);
– I can’t make healthy smoothies until I have the ingredients to make healthy smoothies with;
– I can’t write anything new until I sort out all my old writings (in case I find something potentially brilliant that has publication potential);
– I can’t blog until I’ve read everybody else’s blogs;
– I can’t have fun until I have solved all of the problems in my life and the world;
– I can’t think new thoughts until I have figured out all of the old thoughts;
– I can’t breathe easily until the person I love can breathe easily too (literally and figuratively);
– I can’t cook a beautiful meal until I feel hungry enough to do so;
– I can’t quit my old bad habits until I develop a comprehensive list of goals for new habits and that will take me a year or so;
– I can’t go back to work in any capacity until I am happy;
– I can’t get up early in the morning until I want to get up early in the morning;
– I can’t re-friend that person until I figure out why we became estranged;
– I can’t pick the figs until I figure out how not to be bitten by hundreds of ants;
– I can’t read this novel until I’ve read that novel….

These excuse-ridden conversations with myself go on and on and on and, even though the above conversations are somewhat tongue-in-cheek, all of the ‘can’ts’ and ‘untils’ have culminated in a great, big “I give up!” feeling of absolute hopelessness.

I kind of figured this out this morning as Dina (from Chaos-to-Clear) helped to declutter the back veranda which was crowded with boxes and crates of Ming’s baby toys, legal documents, empty diaries, sentimental quotes, letters, postcards, a lot of photos, and a multitude of bits and pieces. She and I could both see how I had obviously tried from time to time to organise all of the ‘stuff’ but I had to swallow my embarrassment at all of this spider-webbed clutter!

This is a photo of before Dina arrived:

It took around four hours to clear/sort/discard/box up/categorise most of the veranda stuff and at 2pm we stopped and I looked at what we had done. The feeling of freedom and elation was indescribably good. And then that feeling was trumped by the feeling of hope!

And it is only now that I see, in retrospect, that I must have been in a state of absolute despair, to let the house and its contents get the better of me in terms of clutter! Of course this was not just because of Anthony going into the nursing home (that was terrible enough) but all of the ghastly other stuff that happened in those two blurry years – Ming’s surgery, my mother’s broken bones after falling twice, the car accident which I can hardly bear to think/talk/write about despite the fact that everyone survived.

I have written about all of these things in past blog posts but I am reluctant to re-visit those posts because….

– I can’t re-visit all of this painful stuff until I learn how to stand up straight and tall and and smile at the monster!

Note to Ming: I promise not to go to the dump with the rubbish until you get back from your holiday. We shook hands about this so please trust me! (This deal he and I made is another story!)

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Feb 8

The thank you thing
by jmgoyder

It struck me this afternoon, during my shift in the dementia house, that people with dementia don’t get thanked very often. After all, they are the recipients of care so are always saying thank you to us (family/friends/staff).

B, who is always wanting to be busy (because she was one of 12 children and their mother was a perfectionist in every way) is constantly anxious and quite bossy to the other residents sometimes. Her agitation is heartbreaking and, as she is extremely mobile and physically fit, she sometimes challenges the patience of staff.

After dinner tonight I threw the old towels I’d brought in the other day onto a table (an idea suggested by another staff member) and B proceeded to fold them all, meticulously. I helped her with a particularly big towel and, once we had finished, I thanked her rather profusely.

Me: Thank you so much, B. I couldn’t have done this without you.
B: Oh darling, anything I can do to help. I was one of 12 and my mother was a hard worker. Everything was starched and cleaned and perfect, washed, ironed, starched. And we had to get the littlies to bed, changing nappies, cooking tea.
Me: I think you must take after your mother, B.
B: Oh no, I could never do what she did. Do you want me to help you with the dinner, love?
Me: I think I can manage tonight, B, you just sit down and I’ll serve the soup.
B: What about this old lady here?
Me: Just keep her company, B!

I probably haven’t written this very coherently but my point is that when I thanked B for helping me with the folding, she looked at me with her beautiful, bewildered expression, then grasped my hand and said, “So what do we do next?”

Me: I thank you, B!

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Feb 7

Mystery solved!
by jmgoyder

The other evening I finished work in the dementia house at 7pm (new schedule) and headed up to Anthony’s room in the high care section to say goodnight. As I am not usually there so late, I was surprised to see that the hoist was in his room and that he didn’t have a shirt on. His dirty shirt was off and his clean shirt was on the side of his armchair so I put the clean shirt on him and chucked the dirty one in the laundry basket in his bathroom. Then I put his favourite blanket on his knees and we had a chat.

Me: How come you didn’t have a shirt on?
Ants: I was in a fight.
Me: Who with?
Ants: Those kids again! They tie me up.
Me: See this thing, Ants? It’s a hoist and the nursing staff need it to lift you up and to get you into bed.

He wasn’t too anxious but I could see that he had been. So I kissed and hugged him and said my usual goodbye of “Just going up to the shop to get something for dinner”, and turned the television onto the news which he loves.

Then I left. Usually I say goodbye to staff who are around but they must have been busy somewhere else so I let myself out and drove home.

The following day, Anthony said, “I have to tell you something” but he couldn’t articulate anything that I could understand to begin with, then ….

Me: Were you in another fight?
Ants: Yes!
Me: What happened?
Ants: Those boys tied me up again.
Me: I’ll go and speak to someone about this, okay? Back in a sec.

I went to the nurse’s station and asked M if there had been an incident last night and she said Anthony had become aggressive towards staff trying to get him ready for bed so they had had to leave him alone for a bit. Then she looked at me, her expression full of compassion.

M: It’s okay, darl, he settled down.
Me: He seems to think he is in some sort of boxing ring every night. He is terrified of the hoist; do you think that’s it?
M: Okay I’ll tell the staff. One thing we couldn’t figure out was how he got into his clean shirt.
Me: Oh I did that on my way out.
M: Well that’s a mystery solved!

The following day, during my time with Ants and then my 3 -7pm shift, a couple of staff approached me about the previous evening’s mystery, i.e. Anthony had become feisty when various different carers tried to get him ready for bed so they had left him alone for awhile. Not long after that, they came back into his room to find him dressed for bed and with the blanket on his knees, and calm. Nobody could understand how this could have happened because nobody had seen me come and go, so it had mystified one and all until I clarified that it was me who put his shirt on!

Since then, numerous staff have told me the mystery story. You see there is no way anymore that Anthony can put his shirt on – no way at all. His Parkinson’s has pretty much shut down that kind of ability.

I guess the best thing about this experience is that I now know for sure that the carers in this nursing home really do care about him, and, now that I am a staff member too, I get told stories of how he is when I am not there.

As one of the carers said to me yesterday, “I knew straight away that it must have been you who put his shirt on.” Then she said, “You know, he is absolutely besotted with you. I tried to flirt with him a bit and he sort of brushed me aside and said that you were the love of his life.”

I think it is delightful that so many staff are still laughing at the mystery of the shirt and, today, I will tell Anthony the story too and he will SMILE. And I will laugh all over again!

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Feb 6

Overcoming the terror of getting a massage.
by jmgoyder

Tomorrow I am seeing a person who I have known about for some time. She is a qualified personal trainer and masseur and she is the daughter of my friends who own our local butcher’s shop. I don’t quite know why I am so terrified but it is probably due to the fact that I don’t particularly like taking my clothes off and I am really hoping not to have to do that ….

https://www.facebook.com/Absolutebodyworksaustralia?pnref=story

Today I finally got the courage to go to Karissa’s place for a massage and it was fantastic to meet this wonderful young woman, and to have everything explained so clearly before and during the massage. Karissa has this way of making even a somewhat tactile-defensive person like me be okay with taking most of my clothes off, drape myself with towels and lie face down on the massage bench. Karissa left the room while I prepared myself and then she knocked on the door before re-entering the room. I was nervous and feeling naked but then all of that nervous nakedness succumbed to her respectful covering of my lower body with towels and then the massage itself. I wasn’t quite sure what to expect from the massage (having only had a couple of these in my life) so I was a bit shocked when Karissa found these painfully ticklish points in my back, neck and shoulders. After the session, I had to go to work at the nursing home and I felt quite giddy with both the effects of the massage AND the discovery of this amazing practitioner.

Thank you, Karissa, for eradicating the terror!

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Feb 4

Anthony’s 79th birthday
by jmgoyder

Today is Anthony’s 79th birthday and yesterday I promised him I would take him for a drive down south to Golden Valley, his childhood home in Balingup. He asks to go to Golden Valley much more than he asks to come home here and, as it’s been months since I have taken him for a drive anywhere, except around town, I decided to do it.

I was nervous about our little expedition because it is very hot here at the moment and Ants is really hard to manoeuvre when immobile (which is most of the time now). But at 11am he was able to walk, with his walker, the short distance up the hallway and to the outside front driveway where I bottom-shoved him into the car. This bottom-shoving method is very effective; I just get his right leg into the car while he is standing up clinging to the open car door, then I sort of swing my right hip against his left hip to plonk him into the seat. This is not a method I recommend to care staff, who are not allowed to assist once outside the building anyway, but I don’t have to adhere to the care staff rules when it comes to Anthony because I am not his carer, I am his wife. And he seems to get a bit of a kick out of my rough handling – ha!

An hour and a half later we arrived at his childhood home.

We parked there for awhile and admired the scenery and I asked him questions that he had already answered years ago, like about the hedge that he planted and trimmed obsessively for years. “Looks like someone is doing the same thing,” I remarked but, by this time, Ants was finding it hard to articulate anything and his words were skewed.

Then we drove the short distance to the tree park and he suddenly got a bit excited and mentioned the name of a woman he told me about years ago. She and her brother owned the farm adjacent to Anthony’s parents’ and, as a boy, he used to walk up to visit her. I am going to call her Eleanor for the sake of privacy despite the fact that she probably died years ago. So little-boy Anthony used to walk up the hill to visit in-her-30s Eleanor and she would feed him with home-made cake and sometimes play the piano.

At the tree park, I stopped the car and we admired the view and I said, “She was obviously a wonderful person, Ants” – then, right out of left field, he said “There was no sex.”

Right, okay ….

After that, I asked Ants if he wanted to go to the old pub which has been refurbished and he nodded yes but I could see he was getting very tired. This pub is a place we’ve been to from time to time over the years, but this time I knew I would be unable to get Ants out of the car, let alone into the pub, so I parked the car in a shady spot and ran inside to check it out.

I ordered two light beers and asked if it would be okay for us to drink these in the car because my husband was too disabled to come in. Yes that was fine. Then I asked to see the menu and they had oysters – joy, bliss! So I hurried back to the car with the beers and told Ants about the oysters and went back to order half a dozen.

I had to feed these to him because his hands don’t work very well anymore but he vacuumed them down as you can see! So then I raced back into the pub and ordered another half dozen and the chef delivered them right to the car – amazing!

By this time I could see that Anthony was utterly exhausted and there was still 100 kms to travel back to the nursing home. So I drove with the radio on (Ants loves music) and, periodically, put my non-driving hand into his or around his shoulders. We got back nearly four hours after we’d left and the very thing I’d dreaded happened. Ants couldn’t get out of the car or stand up or speak, so I went inside and got a wheelchair but that was still very difficult. Nevertheless I eventually got him back to his room and asked the care staff if they could attend to him soon. Then I kissed him again and asked if his birthday had been okay.

“Not too bad,” he said.

This photo shows what happens when I ask Ants to smile for the camera – mmmm.

Happy birthday to my beautiful, incorrigible, resilient, fantastic, sarcastic, wonderful husband!

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Feb 3

“Chaos to Clear”
by jmgoyder

“Chaos to Clear” is the name of a local organisation I discovered last week. The lovely woman, Dina, who is the boss/instigator of this innovative organisation, came out to the farm last week for a preliminary glimpse of the chaos and, much to my relief, told me that she had ‘seen worse’ which I found very reassuring!

In order to give Dina a bit of context, I described to her what I think must have happened over the last three years since Anthony moved to the nursing home in December, 2011, just after Ming finished high school. The first part of 2012 was consumed with Ming’s spinal surgery, blurry memories of adjusting to Ants being in a nursing home, enormously difficult efforts to bring Ants home as much as possible, and the decision to resign from my job as a university lecturer of nearly 20 years.

So, in retrospect, that first year was a blur of sorrow during which I probably just functioned in a low-ebb kind of way. During the second year, I began to lose control of the heartbroken house because I just didn’t love it anymore. I stopped winding Anthony’s beautiful chiming clocks; I stopped watering his ancient rose trees; I stopped ordering kerosene for the Aga, stopped getting wood for the fireplace, stopped many of the rituals we had in place (like polishing the silver and brass) because Ants wasn’t here anymore so nothing seemed to matter much. I think that those two years when I lost the plot in terms of organisation of the house was further problematised by my reluctance to get rid of Anthony’s hoard!

And now we are into the fourth year of Anthony’s life in the nursing home, my life out here on a farm he adored, and Ming (just turned 21 and managing the upkeep of the farm to some extent and employed full-time at a popular restaurant in our closest city/town), has become a life I don’t want any more.

I only told Dina little bits of this sob story as she and I decluttered the pantry (and that was a fantastic experience of culling!) But, in telling her these bits and pieces, it made me realise how the fact that Anthony no longer lives here in his own house, with his own things, has prevented me from de-cluttering his hoarded goods.

This morning, I got up really early to clear the floor of the pantry, vacuum and mop it before Dina even arrived! I got the impression from her that she had wanted to de-clutter the floor – haha too late – and I told her she had inspired me! We then worked together – Dina, Ming and me – to classify everything as either (1) rubbish; (2) to be given away; and (3) to be valued by an antique person.

In just three hours, a pantry was transformed from a kind of chaotic junk room into a place of organisational bliss! There were a few glitches, of course, because Ming wanted to check every single bag/box of rubbish I had thrown onto the ute to take to the dump tomorrow. To his credit, he did find two unopened toothbrushes and a brass toast rack, but he also dumped things like banana holders, a multitude of rags, crappy old boxes of crappy old crap, and and some cracked china.

We also found a magnum of unopened Bollinger from before I was born!

Thanks so much, Dina, for helping us sort things out!

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Feb 1

Missing Missy!
by jmgoyder

Well I miss Fergie too but Missy was definitely the most mischievous of the two. No matter what yard we put her in she Houdini-ed her way out of it almost immediately. As a result, we got into the habit of letting all of the dogs (our two and the two we were dog-sitting) out for much of the day.

So, the other day, when Missy was conducting an aerobics lesson with Fergie, Blaze and Jack, I drove up to the local shop to get some groceries and returned 15 minutes later
to
find
that
they
were
GONE!

Not Jack and Blaze; they were resting on the front veranda and initially I didn’t fret about Fergie and Missy having been assured by their owners (my nephew and family) that they would not run away. But, after about half an hour, I began to wonder where on earth they were so I did a preliminary search of the acreage around the house, including the pond,
with
a
growing
sense
of
absolute
DREAD!

Two hours later I was in a state of panic and texted Ming who was at work but he didn’t answer so then, with a lump in my throat, and tears in my eyes, I messaged my nephew’s wife and admitted that I had somehow lost their dogs. Then I went back outside to continue the search. “Where are they, Jack? Where are they, Blaze?” I kept asking our rather subdued dogs but of course dogs can’t talk so they just looked up at me sadly.

When I got back inside, having given up, and having resigned myself to the fact that my nephew, his wife, and their two small children would NEVER forgive me, I checked my messages and was
overcome
with
a tsunami-like
sense
of
RELIEF!

“It’s okay – they’re just across the road with J and P” (my nephew’s parents).

OH! THANK GOD!

An hour or so later J and P returned the little rascals and Missy recommenced the aerobics lesson from her preferred position on the table on the front veranda. I have never seen a dog with such kangaroo-like abilities. With gravity-defying agility she simply springs upwards and lands on whatever happens to be higher than the ground. Extraordinary!

But she was a bit tired after her adventure across the front paddock and over the road, so she concluded the aerobics lesson in relaxed mode.

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Jan 30

Doggone!
by jmgoyder

For the last few days we have been babysitting two extraordinary little shih-tzu/godzilla crossed dogs for my ~~beloved~~ nephew.

In the two pictures below you can see that Missy (the littlest of the shih-tzu/godzilla crossed dogs) is an intimidating force. Jack, our Irish terrier, is going to need therapy for bewilderment. Can you see his expression in right corner of the second photo? Poor sweet boofhead!

Blaze, on the other hand (our 10-year-old miniature dachshund) seems to have fallen in love for the first time in his life – with BOTH Missy and Fergie!

But he is a bit overwhelmed.

And a bit tactless.

The bigger of the two shih-zhu/godzillas is named Fergie and, without any reference to the royal family, I have to say that she does exhibit a lack of inhibition in the way she continually interrupts the flirtation between Missy and Blaze. She may need some jealousy therapy, poor girl.I will also have to speak sternly to Blaze about monogamy!

Oh yes and Missy and Fergie disappeared the other day but that is another story!

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Jan 29

Small mercies
by jmgoyder

I have just found out that my lifestyle assistant/occupation therapy role in the dementia house of the nursing home where I work part-time will now allow me to feed those residents who can’t feed themselves. I will also be allowed to serve food and drinks (previously a no-no due to the risks of choking/dysphagia) but now that I have seen the training dvd twice, and filled out the dysphagia quiz/questionairre, I am allowed to help, rather than hover, during mealtimes.

Not only that, the three of us who alternate in this role have had our 3-6pm shifts extended by an hour – to 7pm – which is a wonderful idea because it will allow for a more relaxing atmosphere before and after meals.

I am still finding my feet in this job and today I felt a bit at a loss when the wheelchair walking was limited to inside (due to the heat – 36ish) and, after taking F, Y and B through the inside of the complex, from house to house, I came back to find that M’s daughter had begun a very successful table ball game (rolling a plastic ball to and fro).

M’s daughter is really competent with this game thing, whereas I am still a newbie and not very good at playing games, so I am learning a lot from her. She visits her mother every single day at the same time and when I see her I feel relieved to have her bingo expertise!

It is hard sometimes to find ways to provide entertainment because I am pretty hopeless at card games and jigsaws and arts and craft; I much prefer a conversation and today B and I had a hilarious one.

E, the OT boss, says that to be unhurried is good and to go with the flow is even better but it is harder than I thought it would be to just relax into this role. The unpredictability of how each of the ten women feel each day from 3pm is, of course, the governing cue and if someone is anxious she is the first person I comfort either with a hug or a walk or a conversation. Today, S. was, as usual, crying so I said, “C’mon, S, it’s not that bad!” And she looked up at me, bared her teeth and said, “Okay, Mum!” We all laughed – residents and staff.

B said “Told you so” in her droll way, Y said “Leave me aloooooone!” and J, who hardly ever shows any feelings, smiled at me just before I was finally allowed to give her dessert.

Small, wonderful mercies!

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