jmgoyder

wings and things

Sep 13

The dilemma

by jmgoyder

One of Anthony’s favourite nephews visited on Father’s day last week and wanted very much to take us for a drive. He already knew how difficult this could be and that I had decided, months ago, to stop trying to do this by myself.

Of course, with the nephew there, Anthony rose to the occasion with alacrity and, with only a little bit of help from me, was able to walk up the hallway and outside using his walker. Another ‘plus’ was that it was morning and Ants is almost always more mobile in the mornings. Getting him into M’s 4WD vehicle proved to be a ‘two-person’ challenge but we did it!

It was a chilly but sunny day so M drove us around town and eventually to a cafe where I zipped in to get coffees and cake that we could eat in the car. Over the last few years, we have done this several times, and I have by myself of course, but M’s determination to make this work, to get Anthony out and about, has been such a blessing to me. I hate to ask for help but I am always happy to say yes if a tangible plan is offered and M always does this.

On the way back to the nursing home, M suggested that we park near the restaurant where Ming works – Corners on King – in the hope that Ming might be able to come out and say ‘Happy Father’s Day’ to Ants. This was a great success and then, on returning to the nursing home (just before lunch) Ants was still mobile enough to use his walker to get back to his room, with us by his side.

So what is the dilemma?

Okay, it is this: It is a very long time since I have brought Anthony home to the farm. Often he will ask me to take him home to his childhood home; sometimes he will ask me to light the fire in his nursing home room (thinking that we are home), and I will simulate doing so. His fantastic nephew, M, and his younger brother, J, want me to bring Anthony home and solicit their help.

These gestures are wonderful but what many people don’t realise is that Anthony now has his own Parkinson’s disease dementia. This means that he only occasionally remembers home.

I am doing my best, but it is a daily dilemma.

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Sep 12

Spring chicken

by jmgoyder

One of the best things about getting chooks again is telling Anthony the stories that go with the chooks. He gets a real kick out of my ineptitude.

A couple of days ago I picked up another couple of chooks from some serious breeders who go by the name of Chookloop. As soon as I got home, I put them in the chookpen with the other four but they’re a bit smaller so the big ones started pecking them and one of them was smart enough to figure out how to get out of the chookpen – argh (it took me ages to catch her).

So I brought them inside and put them in a box on the back veranda with some food and water. But, as soon as I turned my back, the smart one flew out and followed me into the kitchen where she hid behind the fridge until I was able to ease her out with a fly-swat (another hour).

I ended up putting them outside the back door in an upside down laundry basket which is where they spent their first night. The next morning, I went out to replace their water and, as I was doing so, the smart one got out, so I let the not-so-smart one out as well. They had a wonderful time frolicking under the fig tree. It was only when I attempted to catch them and put them back under the laundry basket that I realised I might need yet another set of ages/hours.

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Notsosmarty was relatively easy to grab, but Smarty eluded me for well over an hour. I finally had to give up being gentle and simply threw myself into the shrubbery under the fig tree in a kind of football tackle which left us both muddy and disgruntled. I gave her a little cuddle, she pooped on me, and a friendship was born.

Since then, they have both spent a couple of nights in the ground cage we raised the guinnea fowl and peafowl in eons ago. I’ve placed this inside the chookyard so that the other chooks can get used to them without being able to peck them. They are also protected from crows, but they do look a bit miserable this morning because it is so cold and wet.

It is great to be able to answer the dreaded question, “So, what have you been up to lately?” with, “I have some new chooks!” instead of my usual, faltering, “Oh, this and that.”

It’s quite refreshing, too, to be able to give Anthony some new news and, as he has always loved chooks, it is a mutually enjoyable topic of conversation. What I like most about this is that the new chooks, despite reminding us both of previous chooks (and even chooks Anthony may have cared for as a child), are a fresh addition to the conversations we have in the cozy world of his nursing home room.

Okay, a bit of dialogue:

Anthony (referring to ‘my hero’ of yesterday’s post after she popped in with his clean laundry): That’s the girl, right?

Me: Yes – she is wonderful.

Anthony: And she’s on our side isn’t she.

Me: Of course!

Anthony: Your hair needs combing (oh why is this such a preoccupation with him?)

Me: Why the hell are you so obsessed with my hair? It’s windy outside, and raining. I’ve battled a storm to come and see you and all you can do is criticise my hair! I’ll have you know this is the best cut and colour I’ve ever had and I adore my hair-dresser.

Anthony: Give me a comb.

Me: What? Why?

Anthony: I can fix you. You’re still a spring chicken.

Hence the title of this post which, remarkably, ties in with the chook thing – ha!

PS. After Anthony combed my hair, I ruffled it up a bit and he smiled the benevolent smile of a chook-owner.

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Sep 11

My hero

by jmgoyder

She doesn’t know she is my hero.
She works long shifts at the nursing home.
She always makes time to have a chat with Anthony and me.
She has been known to give Ming a hug!

On her days off, she makes beautifully soft comfort blankets for the residents in the dementia house.

On her days off, she collects, and organises various goods to sell in order to raise money for the nursing home. As a result, the last few boxes of stuff I was going to take to the Salvation Army shop will now be donated for this cause.

She doesn’t have to do any of this extra work.
She has her own family responsibilities, like we all do, and yet she
still
goes
the
extra
mile.

My hero, E.

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Sep 9

Restful

by jmgoyder

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Sometimes I feel a bit guilty for being so totally relaxed and lazy in Anthony’s nursing home room. Okay so I did a bunch of paperwork there today but, for most of the afternoon, I just put my feet up on his knees and watched West Wing while he slumbered on and off.

I think this restfulness is good for both of us; he wakes up from a nap and almost always says, “Jules?” For me, it is good to be there because there must be many, many other times that he asks for me but I’ve gone home.

Most of the staff now know the white lie I want perpetuated – that ‘Julie will be back soon’ – and this seems to comfort Anthony (and me of course!)

This afternoon, as Anthony slumbered, I quietly packed up my things and put a pillow on the chair next to his, where I usually sit. He suddenly woke up and said:

Anthony: Where are you going, Jules?
Me: Just to get some groceries, Ants. I won’t be long.
Anthony: I am crazy.
Me: No, you are NOT crazy!
Anthony: I’m crazy about you.
Me: Oh … well, so you should be!

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I no longer think being restful is a lazy thing; it beats the hell out of anxiety, and it beats the hell into acceptance.

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Sep 8

Hallucinations are not just visual

by jmgoyder

I’ve been reading some of Oliver Sacks’ work over the last few days. This wonderful, 82-year-old neurologist – most famous for his book Awakenings which was made into a movie – died last week.

When I was writing my PhD thesis on Alzheimer’s Disease, I referred to Sacks’ work often. I particularly liked the way he melded science with anecdote.

I found it particularly interesting today to read about people who have other-than-visual hallucinations. As it is many years since Anthony began hallucinating, I’ve developed a bit of a fascination I guess.

The fact that people with dementia, Parkinson’s disease and other various neurological disorders, often experience various sensory hallucinations, is well-documented in the academic world but perhaps not widely understood by the people on the ground, so to speak – the carers.

It seems important to translate academic findings into do-able care strategies but that doesn’t seem to happen enough in my opinion. Perhaps I’m in a good position to write about dementia better than I wrote about it before because I’m not studying it now; I’m experiencing its nuances via my husband, Anthony.

And I know it sounds weird but I do find Anthony’s condition, especially the hallucinatory stuff, fascinating. Here are some examples:

Visual hallucinations: baby on his lap; calves outside the window; Ming in the room (when he isn’t); children on the floor; dogs on bed; machinery in the room etc.

Auditory hallucinations: replies to conversations that aren’t happening; often speaks to deceased members of his family as if in response to a question.

Tactile hallucinations: feels there is a baby/child on his lap, or a puppy; will mistake his own hand for mine and kiss it.

A couple of years ago Anthony mistook the hoist that the carers were using to lift him from chair to bed as a pirate ship. I remember vividly the evening phone-calls from the nursing home from carers wanting me to calm him down (in retrospect this only happened a few time). This was terribly distressing of course but soon faded off as Anthony got used to the hoist. But sometimes he still says things that indicate to me that bed-time is traumatic.

Just the other day:

Anthony: They attacked me and took all my clothes off and fiddled around with my genitals.

Me: Ants, they were the nurses putting you to bed! Try to always remember that, please.

I wonder sometimes if the most feisty of dementia sufferers ‘see’ the carers as scary characters from pirate ships, as previous enemies, as terrifying strangers. The latter, I think, is probably the best way of describing what a person with advanced dementia might feel towards a caring nurse at bed-time – I don’t know.

Anyway, this was supposed to be a tribute to Oliver Sacks.

Maybe it is.

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Sep 5

Changing

by jmgoyder

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

I have changed my mind so many times over the last few years, months, weeks, days, minutes, moments, about how to best care for a husband, 79, in a nursing home, and our son, 21, embarking on adulthood. It’s doubtful whether Ming will want chooks in his future life!

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Not very long ago, whenever people talked about the weather, or gardening – whether it be small-talk or serious-talk – I would tune out. I have never been the least bit interested in anything relating to the actual job/hobby of gardening despite numerous attempts to get interested.

Okay, I got interested many times; but I didn’t remain interested, mostly because I was busy working at the university and bringing up the beautiful brat, Ming (who, by the way, isn’t interested in gardening either.)

Gardening was Anthony’s ‘thing’. His family (mother and younger brother) came here in the late 1950s to run a dairy farm and Anthony began planting things – camellias, palms, silver birches, flame trees, roses, citrus, hedges … and a whole lot of other stuff.

Up until the year before the nursing home, Anthony was still interested in planting, watering, and wandering about, in the garden. But he would get stuck! We only had the walking stick then so he would go out the back to check on a hose and then become paralysed and sometimes it took a whole hour to get him back to the house. Then, one day, when he was in his armchair in front of the fireplace, I told him not to move while I went up to the shop to get some supplies, only to find him face-down in the front yard; he’d fallen again!

Parkinson’s disease (and all of its off-shoots, including dementia) is an ever-changing condition that can make life tricky for those who care for family and friends inflicted. For example, sometimes I can show Anthony photos of home – the new chooks, the better-kept garden, the mowed lawns etc. and he will think he has been home.

But, at other times, Anthony will ask to come home and I will have to distract him. This is not because I don’t want him to come home; it’s because he is mostly immobile now so I actually can’t physically manage him. The guilt is ghastly of course but it is easily blitzed by my almost-daily company, in the nursing home, during the afternoons. And photos of the new chooks!

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This morning this wonderful group of gardening people came over (it’s a group I’ve recently sort of joined) and each person had a good piece of advice for me. Plus everyone brings some produce to exchange – fascinating!

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I am changing into a gardening person!

Progress is impossible without change, and those who cannot change their minds cannot change anything.

George Bernard Shaw

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Aug 28

Going with the flow of dementia

by jmgoyder

Here is one of my conversations with Anthony yesterday –

ME: I think we should get chooks again, Ants.

ANTHONY: Yes – good idea.

ME: But this time we should keep them in the chook-yard and not let them out at all – safer from the dogs and foxes. What do you think?

ANTHONY: So when do you start work?

ME: What do you mean?

ANTHONY: F said you’d be working for R.

ME: The vet?

ANTHONY: The veterinarian.

ME: Okay, the veterinarian if you want to be precise! Well, I’m not sure. Do you think I’d be any good at it?

ANTHONY: Yes, I do because of the chooks.

ME: Well I do love animals ….

ANTHONY: You’ll be fine.

There is a fair amount of debate around whether to ‘go with the flow’ – or not – when it comes to interacting with people who have dementia. With Anthony, I tend to fluctuate between ‘going with the flow’ and telling the truth so yesterday I suddenly became a vet.

But other times, when, for example, he is worried that his mother is home alone, I will gently remind him that she died many years ago. He usually accepts this quite well and is sometimes a bit embarrassed that he has forgotten this fact.

‘Going with the flow’ isn’t so simple though. If someone with dementia thinks there is a monster under their bed, it’s obviously not a great idea to agree. But if someone with dementia thinks there is a family pet under the bed, it’s obviously a great idea to agree.

Carers who work in nursing homes walk a tightrope of tact when responding to residents who have dementia. Alleviating dementia-induced distress can be a minute-by-minute challenge.

As Anthony is my husband, I don’t have to be quite so tactful with him and will sometimes go as far as to say, “You’re talking rubbish again!” OR “You’re hallucinating again!” We can turn the confusion into a joke and/or a hug that way.

Anyway, here they are – the two new hens. I was feeling a bit biblical so I have named them Martha and Mary. Mary is the one with the black feather marking. As you can see they have a huge yard!

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I can’t wait to show these pictures to Anthony this afternoon!

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Aug 26

The best gift!

by jmgoyder

It is over three months since I was employed part-time in the dementia cottage of the nursing home and I really miss seeing those residents oftener than I can now.

Even though I visit from time to time during the week, it still feels a teensy bit awkward due to my status of employee having changed to that of visitor. I know many of the relatives and most of the staff so I have been trying to figure out what gifts to bring that will make my occasional visits quiet and seamless – unobtrusive.

There are strict rules now in most nursing homes about gifts. I.e. do not offer chocolates, chilli olives, or brandy, to residents (yes, that was me – sorry!) Also, do not give staff any gifts whatsoever or it may seem like a kind of bribery (this rule is only hearsay but it made sneaking in 6 pizzas one night, two years ago, very exciting!)

Anyway, one of the things that delights Anthony most (apart from chocolate cake with lashings of cream) is the singular bloom of one of his many camellia trees.

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The above is one of the many I bring in daily to Anthony’s room and that’s what gave me the idea of taking lots of camellias into the dementia cottage. After all, when there is someone at the door with flowers, the door is usually opened!

My heartfelt thanks to the staff who look after those with dementia, and those in high-care like Anthony. You are legends so perhaps I should bring a camellia tree in!

I have never picked so many flowers in my life!

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Aug 25

‘Jake’s Mowing and More’

by jmgoyder

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The above photo shows how out-of-control the wormwood hedge had become during the last few years of Anthony living in the nursing home. He used to take such pride in trimming that unruly hedge, in pruning the roses, in picking the camellias, in mowing the lawns etc. As for me? I was not the least bit interested, and never have been, in gardening.

But then, a couple of months ago, I discovered Jake. I had previously employed a lawn service – a lovely couple – just to do the lawns (5 acres) and Ming was sometimes unhappy about this because he felt he should be doing it himself. Anyway, the lovely couple moved into a different profession, Ming got full-time work and, as the grass soon leapt up to knee level, I decided I needed help.

So Jake came to the rescue and not only has he controlled the wormwood, he has also made this place look like it once was when Anthony was in control of things.

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Yes – the above photo is of the same lengthy wormwood, now ‘Jaked’!

Anyway, yesterday this whole place was blitzed by Jake and I came home from the nursing home in the late afternoon and felt as if I were entering a park. The nostalgia was acute as I was reminded of that very first day when my parents dropped me off at this farm to be interviewed by Anthony’s rather formidable mother for the job of house-keeper/companion. I was a teenager so I didn’t really notice the garden but do remember vividly the impression that this was a place of beauty and magic.

Three decades later, this wonderful marriage tangled up by Anthony’s diseases and entry into the nursing home, this place, this farm, became a place of despair – mine. So I guess I just kind of gave up any interest in either the house or the garden; I was just too sad.

Fast forward to now and Jake’s lawn service has been a godsend in that this wonderful man, and his son and off-sider, have taken an interest in the place. I know now that I can call on Jake for garden jobs beyond lawn-mowing.

Anyone who can turn something shabby into a work of art is a person worth knowing.

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[Jake: 0487343141]

I have a couple of my new gardening friends coming over tomorrow morning to hopefully give me their advice on vegetable gardening and chooks, so I think I will just pretend that I mowed the lawn myself. They are sure to believe me – hahahaha!

Thank you, Jake.

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Aug 24

Make Believe

by jmgoyder

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When Anthony asked me about the faulty electric fence today, I reassured him that it was fixed.

Anthony: Really?

Me: Yes! Would I lie to you?

Anthony: I don’t know.

Me: Well guess how I know the electric fence is working?

Anthony: How?

Me: Because I put my hand on it and got a terrible shock!

Okay so this conversation elicited one of Anthony’s amazing smiles (when we were married I didn’t realise he was a sadist!)

Anyway, now that I am being more diligent at recording our conversations, I’ve noticed that my responses to Anthony’s questions or statements (often bizarre due to dementia) are really bland. So today I thought I’d liven things up a bit by telling the electric fence story – total make believe!

There was a period of time recently where I thought Anthony had completely lost his ability to speak, converse, tell stories. But now – just like the return of his smile – his verbal skills seem to have improved.

Of course he is still dozy, and/or incoherent, and sometimes has that blank Parkinson’s expression on his face, for much of the time.

The fact that Anthony looked through his nursing home window and saw an electric fence that wasn’t there gave me an opportunity to enter today’s ‘story’. I am so excited to realise something I should have realised years ago – that I can make things up to match what he is saying – that I can use my imagination to meet his hallucinations.

Make Believe

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