Health | jmgoyder

Parallel universe

by jmgoyder

I think one of the things that is most bewildering, if you are caring for someone with dementia, is the fine line between present-tense lucidity and remembered lucidity.

For example, when I visited Anthony the other day, he was eager to tell me the latest news:

Anthony: Have you seen the news, Jules? We have a new prime minister.

Me: Yes, I saw that too.

Okay, so the above shows how absolutely ‘on the ball’ Anthony can be especially when it comes to current events. I always leave the news channel on his television before I come home because he has always loved watching the news.

But the very next thing Anthony said amazed me ….

Anthony: Mum will be shocked!

This is the kind of conversation that always gives me pause as I try to process the fact that Anthony has, within less than a minute, conflated the reality of now with the reality of over three decades ago. It sometimes seems extraordinary to me that Anthony can so expertly move between eras in the space of a couple of sentences.

Perhaps this is why what used to seem tragic to me has now become fascinating, and sometimes even comforting. After all, I loved Anthony’s mother, who we younger ones called ‘Gar’ so I was catapulted into nostalgia-land briefly, remembering her canny opinions on politics.

Me: Do you think she approves of the leadership change?

Anthony: Yes, but is she all right?

Me: She’s fine, Ants.

One of the last things Gar said to me as she lay in the hospital bed, dying, and I held her hand, was, “You will look after Anthony won’t you”, and I promised her I would. When I made that promise, Ants and I were still eons away from having a romantic relationship, let alone a marriage! So, in retrospect, it was a bit of a far-fetched promise, but I meant it.

Of course, as a teenager, I had no idea how things would all unfold. It is uncanny now to be reassuring Anthony (who is approaching the age Gar was when she died) that she is all right.

‘Parallel universe’ seems to be the phrase that best describes the strange but wonderful space in which Anthony and I connect, cognitively and emotionally.

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Missing Ming

by jmgoyder

Ming has met a beautiful girl and, as a result, I hardly ever see him, except fleetingly.

Of course I still hear him climb in the front window in the early hours (because I keep forgetting to have a second key cut, but I did remember today!)

And, occasionally we indulge in leisurely conversations during the five seconds he has left to get ready for work.

Me: Good morning, Ming! I shout from my bed.

Ming: Morning, Mum. What do you want? he shouts from the bathroom.

Me: Oh, darling, I don’t want anything! How’d the party go?

Ming: I don’t have time for this morning conversation thing, Mum. Can you just leave me alone so I can get ready for work!

Me: Okay, sorry.

It’s all a bit surreal for me. Of course I haven’t actually lost Ming, and I always knew that one day he would meet someone who would both challenge and embrace his opinions, personality, habits, originality.

The beautiful young woman with whom Ming is involved has a similar ‘old soul’ wisdom to his but is much more academic. Every time I meet her, I am impressed by her integrity, and honesty, and the way she looks at Ming.

So, yes, I miss Ming in the sense that I don’t see him as often as I used to. After all, why would he want to be home with me when he can be out and about?

Nevertheless, I always knew that one day I would be without Anthony here (already happened), and maybe without Ming here (happening).

Hence the birds:

I am so proud of this Ming of mine.

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Keeping a record

by jmgoyder

Yesterday, after writing about Anthony not coming home, not asking to come home, and sometimes not remembering home and/or thinking he is home in his nursing home room, guess what?

He asked to come home. Not once, not twice, but repeatedly throughout the late morning and early afternoon. I was so taken aback because this hasn’t happened for ages – maybe months – so I was a bit unprepared. He kept trying to get up from his armchair (he needs help to do so) and, every half hour or so, repeated, “Come on Jules, let’s go.”

Me: It’s too cold and wet today, Ants. Let’s wait until the weather is better.

Anthony: I can light a fire in the fireplace.

Me: We don’t have any kindling.

Anthony: I’ll chop some in no time.

Me: It’s a bit late in the day, today. What about tomorrow morning?

Anthony: You’re unreasonable (removing my hand from his).

Me: What? Are you angry with me now?

Anthony: I haven’t been home for months. You keep stopping me!

After a couple of repeats of the same conversation, more or less, I decided to end it by promising to pick him up at 10.30am today and bring him home. Once that was established, he reached for my hand again and we continued to watch the television and eat olives.

When I got home last night I wondered if this sudden relapse into homesickness (which was a two-year nightmare for both of us which I blogged about on and off) might have been triggered by my conversation with Anthony’s nephew the other day about the possibility of bringing Ants home for the day. In retrospect, I should have steered this conversation away from the topic of ‘home’ (especially within Anthony’s earshot), but I had no way of anticipating that the idea would somehow stick and re-emerge days later.

Okay, so today was when I was supposed to fulfil my promise to Anthony that I would pick him up at 10.30am and bring him home. This may sound callous but I had no intention of doing this, simply because I can’t physically manage him by myself; he is too heavy.

So I made myself wait until after lunch to go in and see Anthony. And I have to say that it was with a mixture of dread and curiosity that I entered his room (with my bunch of camellias).

To my great relief, it was immediately apparent that Anthony had forgotten yesterday’s ‘home’ conversation. Instead:

Anthony: I didn’t expect to see you! You are good at geography.

Me: Look at these camellias!

Anthony: You’re so early! (It was 1pm)

Me: How do you like my boots? (I was wearing colourful boots)

Anthony: A bit way out.

Me: How Dare you!

Anthony: Sit down and shut up.

Me: Don’t you tell me to shut up!

Anthony: Can you put that that that trolley up in my room? (pointing to his walker) – also that woollen coil (pointing to the blanket on his knees).

Me (putting walker into his bathroom and closing door, readjusting his knee blanket): Okay – are you warm enough?

Anthony: Yes.

Me: Right, so can you stop fussing about the stupid blanket? It’s just a blanket!

Anthony: Yes, but look at the little fella (there is always either a child or a pet on Anthony’s lap from around 4pm).

Me: Yes, it’s a beautiful sight, beautiful.

Anthony (after a bit of a slumber): Jules?

Me: Yes? I’m here, Ants.

Anthony: Can you roll me up?

Me: Do you mean put your feet down? (I had his feet up in the armchair) How’s that?

Anthony: Bloody beautiful.

I always have pen and paper handy to scribble down my conversations with Anthony. Today and yesterday have been interesting in terms of his alertness (some days he sleeps and/or drowses during my visits).

It sometimes seems a bit odd to me that I am so fascinated by what is actually a tragic situation but Anthony has always inspired me in one way or another. At nearly 80, he has the most extraordinary resilience; he is positive without meaning to be; and he never complains except to say he is “a bit tired”.

Keeping a record of these conversations seems important somehow. For me, these transcribed tidbits of conversation make me feel as if I have a handle on our situation; that I can somehow control it into a manageable story that Anthony will appreciate.

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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.

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 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!

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!

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!

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!

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

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Aug 24

Make Believe
by jmgoyder

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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Aug 22

Whoops!
by jmgoyder

Oh I am such an idiot!

Okay, this is what happened. I stayed with Anthony later than usual this afternoon because his favourite nephew arrived for a visit and I didn’t want to miss out on that. Then, Anthony’s 5pm dinner arrived as the nephew was leaving, so I ended up helping Ants with the soup, mornay and dessert.

Once that was done, I turned the television onto the ABC News channel and put it on mute as I gathered my stuff to leave. Usually I say I am going shopping, or to the chemist and I’ll be back soon but tonight I told the truth.

The only reason I admitted I was going home was because the first thing he said to me when I arrived this afternoon was:

You didn’t come back last night. Where did you go?

Now the trouble with lies is that sometimes you forget them. So I said:

I can’t remember!

Anyway, as I was putting a jumper on him, and getting a blanket for his knees, and putting the two camellias I’d picked into water, and settling myself into a chair next to him, I suddenly remembered. The following is our conversation:

Me: That’s right! I remember now!

Anthony: You always say I’m the forgetful one.

Me: Well I’m getting just as bad. Anyway, I went home to make the pea and ham soup – remember I showed you those massive ham hocks?

Anthony: Where is the soup?

Me: Whoops – I forgot to bring you some. I will tomorrow. Sorry!

Anthony: Well I’ve just come back from U. and I.’s place in Serpentine. [Note: these relatives are deceased, and Serpentine is 160 kms north]

Me: Really? So you must be exhausted!

Anthony: Yes. So I just want you to get some paper animals in the glove box.

Me: Okay – anything else?

Anthony: A couple of paper animals.

Me: Which ones?

Anthony: Well, they should be in the letterbox … but dead.

Me: Don’t worry, I’ll take care of it.

Anthony: You might be sitting on them. Get up.

Me [getting up]: Nope – no paper animals.

Anthony: They don’t appear to be there.

Me: You’re hallucinating again, Ants.

Anthony: You always say that.

Me: Can you just shut up so we can watch the series?

Anthony [fussing with the blanket on his knees – a constant thing]: The little chap’s had a good day; he hasn’t moved much.

Me: That’s good. It means he’s happy, Ants!

So the fragments of our afternoon conversation ranged from eloquent to incoherent, nonsensical to logical, silent to noisy etc. and I still haven’t figured out if the ‘little chap’ on Anthony’s knee is baby Ming or a dog!

All in all, it was a great afternoon but, just as I was leaving, Anthony suddenly became agitated.

Anthony: But you can’t leave me here. We need to be in the same bed.

Me: I have to go home to rescue the pea soup and I’ll come back tomorrow morning.

Anthony: Why can’t you stay here with me tonight? I don’t know this place! I’ve only ever stayed here once before and it’s where J. and P. got married.

Me [sternly]: Listen, Ants, you are in a nursing home and you are sleeping here tonight and I am going home but will be back tomorrow morning.

Anthony: No!

At this point one of the wonderful carers, having overheard our conversation from an adjacent room, came into Anthony’s room to reassure him and I gave him a millionth kiss and left.

It’s the first time for ages that I have felt distressed driving home. No tears but just distressed that he was distressed.

So an hour ago I rang the nursing home and the nurse-in-charge told me that he had just been settled into bed but she would go and check again. She is, by far, Anthony’s favourite and, when he was upset and confused earlier he actually asked for her by name, describing her as the nice one in the red shirt. She has even been nicknamed his ‘girlfriend’.

Anyway, I’ve now decided to never ever tell Ants that I am going home – never! I will go back to saying things like:

Just going to the chemist to get toothpaste; what kind of chocolate do you feel like; do you want beer? etc. AND: I won’t be long – see you soon….

No more whoopsies!

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Aug 21

Home is where the humour is!
by jmgoyder

After posting that boring boredom post yesterday, and in thinking about writing more seriously again, I made a couple of simple decisions.

1. Persevere with the idea of writing a book about Parkinson’s Disease (utilising various blogposts over the last few years), with the working title of Anthony’s Smile; and

2. Concentrate on blogging my conversations with Anthony, not just the current ones but the past ones. I have already blogged some of these but I have also made notes over the years so I will have to transcribe these.

The reason I want to write this book (which has almost written itself via my blog) is mostly to demystify the nursing home experience – to make it less frightening for both relatives and prospective residents.

Of course there are other reasons to write this book, i.e. I wish I’d known about the UN-stereotypical symptoms of impending Parkinson’s Disease (inability to blink, blank face, constipation, hallucinations, strange behaviours, weird wordage etc. etc.) before we got Anthony’s diagnosis all those years ago.

So my focus over the next few weeks will be on dialogue – mostly Anthony’s and mine with a bit of Ming thrown in. I think that these dialogues are an important way of recording/remembering all of the words that are so easily forgotten, or dismissed as nonsense.

For example:

Me: Ants, you’re so skinny! (patting his absence of a tummy). Are you doing sit-ups?

Anthony: Yes (looking at me in a sneaky way).

Me: So, when exactly do you do these sit-ups?

Anthony: When they need doing.

He makes me laugh more than he makes me cry, this fantastically funny husband of mine!

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