jmgoyder

wings and things

I can’t do this until I do that!

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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:

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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!

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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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Mystery solved!

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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Anthony’s 79th birthday

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.

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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.

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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 ….

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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.

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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!
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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.
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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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“Chaos to Clear”

“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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Frolicking?

Ming (our now 21-year-old son) is a bit of a character. He is loud and I mean LOUD, opinionated, sensitive, angry and has a biting sense of humour. He comes out with the most extraordinary statements, loves his friends ferociously, is a know-all, and often refuses to conform.

Due to these varied, sometimes contradictory, attributes, he and I are quite often at loggerheads about this and that, and these tiffs can be extremely unpleasant and we end up having to agree to disagree. But one of the wonderful things about our mother/son/dad-in-the-nursing-home relationship is our shared love of laughter.

For example, after a recent row (whispered because we were in the nursing home), Ming provided a solution which you can see at the end of this short transcript:

Anthony: Don’t fight, you two.
Me: I’m not fighting – he is!
Ming: Dad, she is … argh!
Me: Shut up, Ming, you’re the one with delusions of grandeur.
Ming: Okay, I’m leaving.
Anthony: Don’t go, Ming. Settle down, Jules.

Intermission: Ming and I sit down on either side of Anthony silently seething.

Me: What are we arguing about, Ming?
Ming: Well, you …. I don’t remember but you are …. wrong (trying not to smile)
Me: Okay, so you are always right?
Anthony: Steady on, Jules.
Ming: Don’t always cry, Mum! I’m sorry.
Me: I’m not crying – I’m smiling, you idiot!
Anthony: Ming, give her a hug.
Ming: I love you, Mum! I wish we could stop fighting.
Me: It’s probably normal, Mingy – it’s okay. We’re all tired.
Anthony: That’s better, you two.

Ming: Oh why can’t we all just frolic in the meadows?

And that’s where the laughter began – and I am still laughing!

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Wheelchair walking

My job as ‘lifestyle assistant’ at the nursing home, also shortened to OT (occupational therapist) continues to be thoroughly enjoyable. The shifts are only three hours – from 3 to 6pm and I do an average of six shifts per fortnight so it’s not a lot of work but hopefully I will get more shifts in the future.

The dementia “house” is set up like an open plan house with the kitchen and dining room in the centre, a sitting room with a big television, and ten bedrooms down three hallways, each with its own ensuite. Then there are a couple of separate little sitting areas as well as a lovely patio out the back, with a garden. Seven of the ten women are ambulant, some with walkers and some without, so there is a code to open the doors due to the risk of anyone wandering off.

I have now established a routine whereby I take one or two of the women for a long walk outside around the grounds and in and through the other four houses, all of which are designed in the same way except Anthony’s which is more like a hospital ward. If I come on duty and find anyone already in a wheelchair, I begin with that person and this week I started to take J. by herself because she doesn’t seem to ever have any visitors and, even though she can walk a bit she is difficult to manoeuvre and quite tall, so I use the wheelchair. I don’t think this has been done before because previously the OTs took her on short walks until one of them wrenched her shoulder doing so (J. has a grip of iron!) In the wheelchair it is possible to take her on much longer walks and she seems to really enjoy this although it’s difficult to tell because she doesn’t talk much and even when she does she is hard to understand.

I like to take her by herself for that whole one-to-one thing but sometimes one of the ambulant women comes too. We go out the locked door into the sunshine and gardens then through a small parking lot at the back of the nursing home then inside Anthony’s section which begins with a foyer, then a large activity room, down a very long hallway, saying hello to the residents in the rooms to the left and right (including Anthony of course!) then out to another garden area at the front of the nursing home, up a steep driveway at the top of which you can see the ocean, then left down a road that enters the section where the independent elderly live in self-contained units, all with beautiful gardens, around a roundabout and back to the ocean view. Then we go back down the driveway and into Anthony’s section again, turn right to go through the dining/living area up another hallway and then back down and out into another garden area, then back down Anthony’s hallway, waving to him on the way (which he finds extremely amusing) then, once outside again, instead of turning left which leads back to the dementia house, we turn right and head up the narrow driveway past two other nursing home houses and up a hill to where there are other self-contained units. Sometimes the residents will come out and say hello to us and have a chat; then we turn around and head back to the dementia house. This takes around half an hour. Once back, I pick up F. or O. or D. and begin again. And again, with different people.

One of the things I have found most difficult about these wheelchair walks is walking slowly. It’s like the way you have to walk up the aisle! I am ordinarily a very fast walker but having already frightened the hell out of two women who thought they were about to be catapulted out of their wheelchairs, I now walk extremely slowly in a smell-the-roses way (and there are lots of roses to smell because the gardens are beautifully kept).

With the weather so beautiful lately this seems to me to be the best activity and my goal is to get all ten women out and about during one shift, but so far I have only been able to get seven out and about (yesterday), because dinner is served at 5pm.

The wheelchair walk tends to calm even the most agitated of the women down which is pretty much what I am there for as this time of day is notorious for ‘Sundowner Syndrome’ an anxious time for many people with dementia who may remember it as a busy time of day, getting dinner ready etc. B. who walks without any assistance, becomes increasingly anxious about getting back to cook dinner and when is her husband coming home? S. cries a lot, and O. becomes aggressive. The long, slow wheelchair walk seems to calm these anxieties to some extent and I much prefer doing this than singsongs and card games.

The sunshine, fresh sea breeze, gardens full of late blooms, and interaction with residents and staff outside the dementia house, is, I think, the most beneficial thing I can do in this wonderful role. The fantastically weird conversations we have with each other outside create a rapport and laughter that isn’t as easy inside.

Me: Are you enjoying it out here, S?
S: Not particularly.
Me: (laughing) What?
S: You cheeky man!
Me: I keep telling you I am not a man!
S: Oh, sorry (starts crying)
Me: Stop it – I was only joking. Do you want a hug?
S: Yes, please (we hug).
Me: If you start crying again I will bop you (laughing)
S: I’ll BOP YOU, young fella!

OR:

Me: Do you want to go for a walk, Y?
Y: Leave me alone, leave me alone, leave me alooooooone – doesn’t matter.
Me: Your chariot awaits (pushing wheelchair next to her).
Y: Oh all right, all right, all riiiiiiiiight.
Me: See! Look at all the flowers, Y.
Y: Pretty. Pretty flowers, pretty flooooooowers.

OR:

Me: Do you want to come for a walk, B?
B: Oh I don’t think there’s time. X. will be home for tea soon and where are the boys? What’s the time? Do I need my lippy (lipstick)?
Me: It’s only a short walk and I need you to help me with O. (O. in wheelchair).
B. Well as long as we’re not too long. Have you seen my handbag?
Me: We won’t be long and X (deceased husband) doesn’t mind.
B: Are you sure. Could you ring him?
Me: Somebody already has and it’s fine.
B: Well I suppose it’ll be all right. Just let me get my handbag and put my lippy on.
[15 minute search for handbag]
Me: Come on B.
B: Oh I think I should stay put. X. won’t know where to find me.
Me: He knows exactly where you are and we won’t be long anyway, B.
B: Oh well I suppose so but what about money? Wait a minute darling I just have to put my lippy on.
Me: B, I really need your help with this wheelchair.
B: Of course.

OR:

Me: O. do you want to go for a walk outside using the wheelchair?
O. No, no noooo – I don’t want the red with the pink. What is this? Stupid!
Me: How do you like the sunshine?
O. Too HOT – too fast, slow down!
Me: Sorry, sorry.
O: Slow down!
Me: We are crawling now, O.
O. Oh you crazy one – crazy crazy (guffawing).

Of course there are many more conversations, lots of silences and miscommunications, but the wheelchair walking routine I’ve now established is a winner in so many ways!

52 Comments »

Silence

Lately I haven’t felt like reading or writing anything much. Despite this temporary aversion to words, I have plodded in and out of other people’s blogs and/or Facebook posts and have begun copy/pasting bits of my own blog into a possible book about Anthony and Parkinson’s disease but the initial buzz of this latest project has abated to a low hum. I know that this is worthwhile so will continue but re-reading the bits and pieces of posts I have written over the last three years of our unwilling venture into the landscape of Parkinson’s disease and dementia seems to have rendered me wordless. I draw enormous encouragement and inspiration from other people’s words but have become sick and tired of my own wilting voice.

The strangest thing about my own silence has been in acknowledging other people’s silence, especially those with dementia with whom I interact at the nursing home in my new part-time job as ‘lifestyle assistant’. Initially (a few weeks ago) I accompanied the wheelchair walks with my loud voice – admiring flowers, pictures on walls, the automatic door, the delicious smells coming from the kitchen etc. But, over the last couple of days, I wheeled various women around the gardens of the nursing home property in silence – just listening to whatever they had to say or, if the person were unable to speak, I shut up too. The unbusy silence of these short journeys seemed somehow wrong at first but I now see how my silence allows whoever is in the wheelchair to smell the roses, see the pictures, hear the greetings of staff, touch the hands or shoulders of other residents, and converse with everyone we come across.

I have never loved a job as much as I love this job, but some of the lessons learned, via the different kinds of emotional suffering people with dementia endure, leave me speechless. Touch has become much more important than words and, even though I am a huggy person, hand massages aren’t really my forte but these really work in calming some people down.

Now that Anthony has entered this dementia phase of Parkinson’s, I am learning once again how to listen better, how to shut up, and how to be comfortable with silence. I really believe in this silence thing now but am not sure. I know that with Ants my silent presence in his room, or wheelchair walking around the grounds, frees him from the responsibility of conversation now that he has kind of lost track of language.

Anyway, perhaps, sometimes, silence IS golden.

64 Comments »

Anthony book 1: Three years

January 9, 2015

This week marks the third year that Anthony was admitted into the nursing home for respite and never came home again.

Except to visit. The shock of it.

This is what I wrote in my blog at the time:

Jan 11 2012 Breaking

Yesterday, Son and I broke the news to Husband that his two weeks in the nursing home lodge might need to be extended, might even be indefinite and that this has been recommended by three of his doctors. Son reinforced this by starting a verbal sparring match:
Son: We can’t look after you anymore, Dad!
Husband: Well, you’re not much of a son, are you!
Me: C’mon, guys, give it a rest.
Son: Dad, can’t you see you need nursing care?
Husband: I’ll get better – wait and see. Don’t give up on me. Where’s my wife?
Son: Her name is Julie, Dad, and she’s crying in the bathroom as usual.
Husband: What the hell is she doing that for?
Me: Sorry, just had to go to the loo.
Husband: Are you okay? You look terrible. You really need a haircut.
Me: I know.
Son: Argh – I’ll meet you out in the car, Mum. Bye, Dad.
Husband: Wait – give me a hug.
Me: He’s okay; he’s a teenager.
Husband: Why is he so ….?
Me: He’s angry.
Husband: I love you two more than life.
Me: Us too.
Husband: You better go.
Me: Yeah, the brat’s waiting – give me a hug.
Husband: See you tomorrow?
Me: See you tomorrow.
Breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking, breaking…. br

Perhaps it is this strange anniversary of almost unbearable emotional pain that has rendered me numbly bleak (bleakly numb?) over the last few days.

Lately, the shiny wonder of having discovered different ways of happily being in the nursing home for so many hours per day with Anthony has begun to show its first lace-like signs of rust.

I AM SO BORED!

24 Comments »

Up hill and down dale

One of the things I do during my afternoon shifts at the nursing home is to take wheelchair-bound residents for a ‘stroll’ around the grounds or, if it’s too hot, through the facility, or both. Until I got this job, and before volunteering, I wasn’t familiar with the layout but now I am; there are four ‘houses’ each with its own name, but all almost identical in design (kitchen and dining room in the centre, living rooms x 2, patio area and garden, and bedrooms all private and each with an ensuite, at the opposite ends of a hallway.)

Anthony is in the ‘high care’ section at the centre of the facility and this is more hospital-like in terms of design.

The ‘Dementia house’ (obviously not called that, and named after a significant person, but, for the sake of privacy, let’s call it ‘The Lodge’) has ten permanent residents, all women, most of whom are mobile but three of whom require wheelchairs to go any distance. I absolutely LOVE going for a walk with these beautiful women up and around the curves and corners and small hills of this facility, inside and outside, down hallways, through gardens, into other ‘houses’ to visit.

I only do a few short shifts per week (3-6pm) and the job description is “Lifestyle assistant” so am still learning how to be more creative with activities, games (not my forte!) But what an absolutely WONDERFUL job! To be able to socialise, converse, have fun with people who have dementia. The thing I like to do most is going for a walk and sometimes this is hilariously rewarding like the time I took Suzie past Anthony’s room, and we waved (even after just a couple of weeks, Ants has come to expect this and waves back), and Suzie said to me, “Poor old bastard”.

I retorted: “That’s my husband, Suzie!”
“Oh sorry,” she said, chortling with mirth.

Okay, back to the up hill reference: Fiona is heavy and wheel-chair bound so I get a bit terrified now because the other day, as we were going UP the driveway, her wheelchair decided that DOWN might be better and I briefly lost control and we landed gently into a rosebush, unharmed. Fiona, who constantly hums a refrain of a hymn I am yet to recognise, giggled, sitting regally in her wheelchair while I struggled with thorns.

All names have been changed to protect the privacy of these people with the exception of my beautiful husband, Anthony, who, when I was wheeling someone past his room the other day and waving as we always do, called out, “You’re getting faster, Jules!”

But, by the time I am finished my shift and go back to Anthony, he is so confused and sleepy that saying goodbye isn’t difficult because it is now possible to comfort him with “I am just going up to the shop to get some bread.”

48 Comments »

Christmas Eve’s eve

Well, it’s the day before Christmas Eve and I am finally ready to be festive. My rather blah mood was transformed into enthusiasm after having breakfast with my mother the other day because we went shopping together and I found some things that I hope Ming will love even though he ruled that it should be a strict 3-gifts-per-person Christmas. Unfortunately I take great pleasure in breaking Ming’s rules so there are now 20 presents under the new little Christmas tree he bought. I thought that was a good number since he is still (until January) 20 years old.

Oh how I miss the pillowcase years (a habit inherited from my parents in which an empty pillowcase was placed at the end of each of our beds and on Christmas morning would be filled, rather miraculously, with presents). Up until just a few years ago, I would send Ants and Ming to bed and would spend the late hours of Christmas Eve wrapping presents and putting them into an identical pillowcase (just in case Ming woke up). Then I would go to bed but wake up at around 4am to swap the empty pillowcase with the full-of-presents pillowcase. Alas, those exciting, magical days are long gone. Last year we didn’t even ‘do’ Christmas because we were too sad about this and that and, until a few days ago, I felt the echo of that sadness and an inability to be bothered.

Then, all of a sudden, a wave of hyperactive nostalgia hit me and I was filled with the energy of what Christmas really means – the birth of something/someone miraculously new – a Jesus moment, the memory of when Ming was born, a newfound excitement about seeing Anthony every today, so ….

…. I decorated Anthony’s nursing home room and sticky-taped old and new Christmas cards on his mirrors and pictures, draped the clock with tinsel, decorated the rose tree I bought him the other week, that looks real, with baubles and wrapped Ming’s presents in his room. You see, we are having Christmas in the nursing home this year; it will be the first year that he hasn’t been home for Christmas and it wasn’t until yesterday that Anthony realised this.

Ants: I’m a bit taken aback.
Me: Why? What’s wrong?
Ants: I thought it would be at Bythorne (the name of our farm).
Me: Are you kidding? It’s too hot and the flies are terrible out there! Anyway I like it here better! Don’t argue!
Ants (smiling at my sternness): Okay, you win.

Today I will wrap Anthony’s presents in his room while I face him towards the window so he won’t see; then I’ll sticky tape more cards around his room, then we’ll have a small glass of champagne together with a bit of mango (a great combination I discovered the other day).

Tomorrow night, various members of the family who can make it, will meet at my mother’s place for the traditional Christmas dinner of turkey, ham, Harvard beets (my mother’s specialty) etc. but I won’t tell Ants about this because it would be impossible for him to join us now that he is so incapacitated physically.

Then, on Christmas morning, Ming and I will open our presents to each other, saving a few to take into the nursing home at around 10am where my mother will join us at noon for my crayfish cocktail and some champagne. At 3pm I will head off to the dementia wing for my afternoon shift, Ming and my mother will go home, and at 6pm I will go back to Ants’ room to say goodnight.

A ‘Jesus moment’ – over and over and over again.
Amen.

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