Anthony: How do you always find me? It’s remarkable!
Me: I have a really good map, and a really good memory.
Anthony: You look beautiful.
Me: Wow, thanks, Ants! You look good too.
Anthony: I need to get rid of this moustache.
Me: What? You don’t have a moustache, Ants – you haven’t had a moustache for years.
Anthony: So what do I have?
Me: Well, you have a lack of moustache I guess….
Anthony: Mmm.
Me: Could we resume this discussion tomorrow?
Anthony: Yes, just bring chocolate.
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I was reading a novel the other day in which a nursing home was described as a “dumping ground”. It wasn’t the author of the novel who said this; it was her prissy main character.
I felt as if I had been slapped in the face.
Nursing homes are not dumping grounds! And yet this seems to be a common misperception, often accompanied by barely disguised expressions of absolute horror.
Nursing homes are not houses of horror!
When I recently bumped into an old friend and told her that Anthony was in a nursing home, she reacted with as much distress as if I had told her he’d died.
Okay so the nursing home decision is a last resort and I well remember how the three of us (Anthony, Ming, me) struggled with that decision. It was a mutual decision, hastened by Ming being scheduled for major spinal surgery (scoliosis) on Valentine’s Day that year. I had arranged two weeks of respite accomodation for Anthony at the nursing home while Ming and I headed up to Perth. Long story short, we got back and were told we could have the nursing home room permanently.
Now that decision was horrific – not because I/we had a horror of nursing homes per se, but because of the unexpectedly quick separation. If you don’t take an available room in a nursing home, you might be waiting months if not years, so we said yes. Much of that first year of Anthony living in the nursing home is a blur to me now but my mother tells me I wore the same brown coat day after day, week after week, month after month, and cried all the time. I know I must have blogged about it but I don’t want to re-read those posts at the moment.
Neither do I want to admit the relief I felt at the time but I have to admit it now because I still feel that sense of relief every time I see Anthony. Why? Because the nursing home decision alleviated all of the physical and emotional stress and exhaustion of caring for him and gave me the freedom to care about him again.
Did I stop loving Anthony during those years before the nursing home? Of course not! Did I stop liking Anthony for wanting to go to the loo a thousand times a night? Yes!
The nursing home decision has, over time, replenished my energy, allowed me a social life with family and friends, given me time to write, enabled me to focus more on our beautiful son, and, importantly, gifted me with the ability to fall in love all over again….
With Anthony.
Nursing homes are not dumping grounds; they are, however, the most unvisited resorts in the world.
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In the nearly 24 years that Anthony and I have been married, many friends and family have commented that coming into this house is like stepping into a time warp. As a newlywed, married to an older man whose mother I had cared for, I didn’t feel the need to alter anything because I already loved it here.
I don’t love it here anymore.
Well that’s what I thought the other day and the thought itself took me by surprise.Then it took me many more days to get that thought comfortable in its own words. But uttering those words took courage.
“I don’t love it here anymore, Ming.”
“Nobody comes here anymore, Mum.”
“That’s because Anthony isn’t here, Ming.”
“But WE are here, Mum!”
And so we have begun the process of spring cleaning the corners of the house that Anthony will never see again, except in his memory.
Why don’t I bring Anthony home? Because he is mostly immobile. Because it might break his heart to come home and then have to go back. Because it would confuse him terribly. Because he thinks his mother is still here. Because of ablutionary issues. Because, despite having lost so much weight, he is too heavy. Because I don’t want my already-cracked heart to shatter. Because I love Ming….
This crisis of conscious has catapulted us into re-seeing this little old house as ours or, as Ming put it, “YOURS, Mum!”
I don’t quite know why taking all of those dusty books out of the dusty book case did me in because we organised them into categories: antiques, donations, rubbish. Perhaps it was the delicate scrawly signature of my husband’s 5-year-old self inside an otherwise empty school diary dated 1941.
And then I began to cry.
“I don’t love it here anymore, Ming.”
“You will, Mum.”
Spring cleaning is not for the faint-hearted!
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Today, as I held Anthony’s hand in mine, he kept on bringing my hand slowly up to his mouth, then kissing it. This happened over and over and over again until it became hilarious for both of us.
Me: You are melting my heart, Ants!
Anthony: That’s as it should be.
Me: We never used to hold hands in the old days – it’s kind of weird – and I am getting a bit irritated. Sorry!
Anthony: Your hands are in bad shape. Mine have things on them [pointing to one of his thumbs and a finger where I could see nothing wrong].
Me: Does it hurt?
Anthony: No it’s wonderful.
Me: Oh, okay I think I get it. Well, you’re lucky – one hot day and I have the rotten blisters back [I developed a strange condition a few years back whereby perspiration causes this thing called pompholyx].
Anthony: You need to stop scratching them.
Me: Yeah, but it’s so itchy! Anyway stop telling me what to do. You’re lucky you have such wonderful hands.
Anthony: Yes, I do, don’t I.
Okay, so the above conversation was at around noon, then I met a friend for coffee. I got back to Anthony at around 2pm. The hand holding resumed but the conversation did a bit of a U-turn in the cul-de-sac of Anthony’s dementia. Instead of kissing my hand, he kept removing it from his and placing it very neatly onto the side of my chair.
Me: Why are you rejecting me?
Anthony: It’s in the way. Jules, can you take these off? [He raised his hands, palms-up to me.]
Me: So you want me to take your hands off?
Anthony: Yes!
Me: But why? I can’t remove your hands, even if I wanted to, Ants.
Anthony: They’re in the way.
Me: In the way of what?
Anthony: That boy.
Me: You mean, Ming, our son?
Anthony: Yes, that’s the one. Can he take these [again, offering his hands up]. They could join those two little sheds into one.
Me: I think that’s a fantastic idea, Ants and we should tell Ming as soon as possible. He and I already know what a fantastic farmer you are. Thank you!
Anthony: So when are we going home?
The wish to come/go home has, unfortunately, become a frequent topic of conversation lately, after about a year of Anthony forgetting all about this beautiful farm. I hate the moments of slicing lucidity in which he says to me that he wants to be back at home; I hate bluffing and promising this impossibility; and I hate my deception of course!
Anthony’s immobility, and other issues, make it impossible for me to bring him home, even for a couple of hours. I can’t lift him at all any more; he often requires two carers and a hoist.
He is, however, the most uncomplaining, resilient, beautiful person I will ever know and I am so proud that Ming has these attributes too.
Quite handy!
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This afternoon, I entered Anthony’s nursing home room and his expression was of surprised delight. Nowadays, this is a bit of a novelty as he is often asleep.
Anthony: Jules! I didn’t expect you so soon!
This was a great relief to me as I had been away for a couple of days.
Our afternoon was enhanced by a visit from P, Anthony’s nephew, who visits most weekends. P recounted stories of his own childhood on the farm where Ants grew up – including Anthony’s pet pig attacking him.
Anthony’s words were stilted but eventually the pig (and other) stories came out and it was wonderful to see Anthony smile in remembrance. All thanks to P of course!
I so love the way Anthony smiles and am so grateful for P!
Ming has been mistaken by Ants for various nephews but copes extremely well and simply kisses his dad on the forehead and leaves. So far, Ants always recognises me but I am ready of course, when he won’t.
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When a little parrot you have never seen before
trips clumsily over the fragment of a mung bean sprout
you have placed on the balcony ledge
of the resort you have brought your mother to, to celebrate her 82nd birthday,
you hold the rest of the mung bean sprout in the palm of your outstretched hand
and smile when that little parrot takes it and flies away,
its wings flapping once
like a wink.
That sentence was too long and I don’t know if I have punctuated it properly for poetry. But I do remember advising my creative writing students to use commas when they felt the need.
Ming, Meg and I spent some time together at this wonderful resort and, thanks to Wifi, my mother was able to receive the multiple birthday messages from family and friends. We all thought the little parrot would come back as it seemed so tame. Having taken multiple photos of a similarly tame-seeming kookaburra, it seemed inevitable that the little parrot would return for a photo shoot – ha.
I had seen Ants and fed him his lunch on the day I drove us down south to the beautiful resort. My mother and I were supposed to check in at 2pm but I was delayed because Anthony was in ‘agony’ (his unusually dramatic words, whispered to me) due to constipation. Once that the situation was remedied and he was back in his armchair and comfortable, I told him I was taking my mother out for lunch for her birthday.
Anthony: I think I might stay here.
Me: That’s fine, Ants. I’ll see you after the birthday lunch.
48 hours later, my mother and I arrived at the nursing home in time for me to feed Ants his lunch again. He didn’t appear to realise that I had been gone for longer than a day which was a blessing to me.
During our time at the resort, my mother and I basked in the luxury of the beautiful view, the wonderful wineries, the gift-shops where I found unusual wine glasses (my latest hobby). My mother found a fantastic onyx ring which absolutely made my day. And we walked through the rather magical gardens – just us the first time, then with Ming who came down laden with three varieties of Bailey’s Irish Cream – his birthday present for Grandma.
I saw the kookaburra once more, from a distance.
My mother recollected how much I cried and cried after placing Anthony in the nursing home and I admitted that I didn’t remember this phase. I know I can look back on my blog and re-see that pain but I don’t want to because it is all fine now; Anthony, Ming and I have accepted that it is what it is….
Happy birthday, my beautiful mother – thank you for your support and love for all of us, not just me. I have learned the most important life lessons from you – to be ready for anything and to always, always, get back up from a fall.
And I know that parrot’s address
like a wink….
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Today I did some volunteering at another nursing home before going to see Anthony. I told him I had just come from work (I call the volunteering ‘work’ because Anthony’s lifelong concerns about money are still a big part of his psyche).
Anthony: So how much money is in the bank?
Me: Thousands!
Anthony: How many?
Me: (pulling a fictitious figure out of the air) $35,000!
Anthony: That’s not bad.
Me: What do you mean ‘not bad’? My job is making us rich! You should be proud of me!
Anthony: I am, Jules.
Me: Ants, the reason we are so wealthy is due to all of your shares and your hard work. We don’t ever have to worry about money again because you are such a good provider!
Anthony: But did you turn the pump off?
Me: Ming does all of that now.
Anthony: What about the calves?
Me: All safe, tethered and beautiful. You should be proud!
Anthony: I fixed that fence this morning.
Me: I know – thank you. Everything is fine now.
Anthony: But what about Mum?
Me: Ming is with her – she’s fine.
Anthony: Okay.
Me: I have to go back to work now – will you be alright?
This was our conversation at about 4pm today and I used ‘work’ as a way to leave him with the assurance that I would be back soon. As I’ve said before on this blog, telling Anthony that I am going home often distresses him because he wants to come home too – of course!
I have been naming the above such conversations as “Dementia dialogues” and I sometimes worry that this title may be construed as demeaning or patronising to Ants and other people with Dementia. This is certainly not my intention.
As I was leaving, we had this conversation:
Anthony: You don’t have much of a life do you.
Me: What are you talking about, Ants? I have you and Ming – what more do I need?
Anthony: But we’re all split apart.
I was so shocked by the lucid poignancy of this statement that my heart felt like it did a somersault. Anthony said this without a flicker of unhappiness and I remembered how factual he used to be – how pragmatic.
And then, just now, before I began to write this post, I realised that Dementia might affect, and sometimes kill, physical and cognitive memory, but it doesn’t necessarily affect emotional memory.
I told Ming what Anthony said today and he punched his heart softly.
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Anthony: I saw her in the corridor … earlier….
Me: Who?
Anthony: Julie – it was Julie.
Me: I AM Julie, Ants.
Anthony: Yes … it’s extraordinary.
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Me: How come there’s water all over the floor? Did you tip your drink out again?
Anthony: Yes, because everybody is dead.
Me: What?
Anthony: This is a funeral home.
Me: No way! This is a nursing home – remember?
Anthony: All of the kids ….
Me: Are they still bothering you?
Anthony: I had to fight one last night.
Me: Did you win?
Anthony: Half and a quarter….
Me: Good on you, Ants! They won’t be bothering you again, I’m sure.
…………..
Anthony: Well come on, Jules – let’s go.
Me: Where?
Anthony: Around the block.
Me: Which block? The farm or the nursing home?
Anthony: The rose garden.
Me: What rose garden?
Anthony: Along the driveway!
Me: It’s too rainy and cold, Ants – sorry. Maybe tomorrow?
……………
The last several weeks have been a bit of a challenge for me because my anxious/depressive tendencies roared into my brain – WHAMMO! – when I mistakenly thought Ants was on the brink of death. I don’t want the knife edge of that grief again and am hoping that I am now better prepared.
Me: I saw an advertisement on TV the other day about cremation versus burial. What do you reckon? You know what I mean? For both of us of course.
Anthony: It’s far too early to think about that.
Me: Okay, Ants.
Anthony: There’s something ….
Me: Is it to do with my exquisite face?
Anthony: I wouldn’t go that far.
Me: What?
Anthony: But it’s quite nice, I suppose.
Me: Harrumph!
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Me: Why were you so horrible to me yesterday?
Anthony: Because you wouldn’t take me home to see Mum!
Me: I’m sorry, Ants – it’s just that ….
Anthony: And, by the way, Jules – Mum is not dead!
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