I had to search through my blog to find the date of Anthony’s transition from respite to permanent resident at the nursing lodge. It was January 31st, 2012, 377 days ago.
How could this have happened just a year ago when it seems like a hundred years ago?
How could this have happened over a year ago when it seems like a few minutes ago?
377 days of separation.
For the last few weeks I have been having rather dramatic, block-buster-type dreams. Inside the dreams, I am always the hero who knows she is in a dream, but also knows that, in order to escape the dream, she has to either get away from, or else confront, the baddies.
The most recurrent dream is of something preventing Anthony and me from getting married. This barrier is usually a series of verbal and visual ‘stills’ of what really happened (Anthony’s younger brother’s protestations, my bewilderment, and Anthony’s heartbreak). These dreams are becoming so boringly predictable that I am usually able to clamber free.
But last night’s dream was really weird. Inside the dream, I was away at a conference and Ming rang me to say that Anthony’s old girlfriend had dropped in and wanted to stay the night. Then, the next morning, when I got home from the conference, Anthony admitted that he had slept with her.
Okay, so this was all a dream within a dream, but even when I escaped the inside dream, I found myself trying to climb the escalators the wrong way, in an empty airport somewhere in the desert.
I was glad to wake up!
I remember when you first winked at me
across the dining room table,
when your mother said I had overcooked the poached eggs.
You were 40 and I was a teenager
so the wink was just a wink of humour,
harmless and not flirtatious in the least
But that wink burrowed itself into my psyche,
made me ache for another wink….
If I hadn’t boiled the grapefruit marmalade all over the Aga,
a second wink might have happened sooner.
Oh well.
I remember when you first hugged me.
It was a week after my father died suddenly and I will never forget
the hesitation of that first hug,
your delight and nervousness,
your big, muscled arms,
my tears on your shoulder.
I remember the evening when you first understood me
as we bantered philosophical conundrums across the kitchen table
while your mother snored gently in the next room.
You don’t remember much of this, your eyes have forgotten how to wink, I banter as you snooze, and your arms no longer have the strength to hug me.
The time may come when you don’t remember who I am,
but I will never forget who you are,
my rock,
my light,
my reason,
my love,
my laughter.
It occurred to me today, while Anthony was home for the afternoon, that, instead of getting all anxious about his PDD symptoms, I/we could embrace this phase as a kind of adventure.
When I first began blogging, I had no idea that I would begin to care about people who I may never meet face to face.
As a newbie to the world of birds, I was drawn to blogs about birds, then drawn to blogs about photography.
As a carer for a husband with Parkinson’s Disease, I was drawn to blogs about PD, nursing homes, other people’s experiences of other illnesses.
As the mother of a teenage son, I was drawn to blogs about parenting, children and Erma Bombecky humour.
As a writer, I was drawn to blogs written by an array of different people – all ages, all styles, all genres, all fantastic.
As a woman battling grief, I was drawn to blogs about grief and blogs about inspiration – a good mix.
Tonight, I am drawn into the blog of a woman who has become my friend. Her daughter died today after a gruelling battle with disease.
I care about you.
Medical interventions in western societies across the globe have made it possible for elderly people afflicted with illnesses that cause them pain, misery and confusion to be given a few extra years of life.
Anthony was so distressed on the phone tonight that he said he wanted to die. He doesn’t usually say things like this and the thud of his words squished all of my heart’s remaining envelopes into hot putty.
His prostate cancer is fullblown and now untreatable, his Parkinson’s Disease (our main woe) has rendered him incapable of doing what most of us do automatically – eating, walking, going to the loo, answering the phone, conversing, smiling….
And now the dementia, nibbling away at all of our yesterdays.
I am sorry if this causes offence to anyone but death would be better than the living hell of a ‘ripe old age’
I love you so much, Anthony.
It is hard to describe the dread that I try not to feel when getting Anthony home for the day. Despite the regularity of medications, advanced Parkinson’s disease (with a bit of dementia thrown in for good measure) can rear up in all sorts of unpredictable ways, minute by minute, hour by hour, day by day. For example, I never know if Anthony will be able to walk or not, talk or not, eat or not, go to the loo or not, understand or not – and the list goes on.
The other dread is of Ming’s plummeting mood when Anthony comes home. A relationship between an 18-year-old son and a 76-year-old father is not necessarily easy even without the addition of PDD so, when Ming tries to communicate and Anthony either doesn’t understand or doesn’t respond, Ming gets terribly hurt and wants to withdraw. I understand this and rarely try to manipulate the situation in order to make everything okay. Instead I let Ming go to his room and do his own thing because, to be honest, I too, want to withdraw from an Anthony who is mostly silent and unresponsive and often asleep.
Of course there are beautiful moments of mirth and joy and love, but they are few and far between now because Anthony has become very hard work. Walking him across a room can take forever if his feet aren’t working, conversation is staccato with miscommunication rife because Anthony often doesn’t ‘get it’. Ablutionary situations are very difficult, both physically (me lifting) and emotionally (Ants having to be helped).
The other thing I dread is Anthony’s inevitable question: “Can’t I stay here for the night?” where I have to say, “I can’t – you are too heavy and you need two nurses to help you in the night.” I have tried to deal with this question via humour, honesty and sometimes anger, sometimes tears, but he keeps asking me, over and over again, during every visit here or at the nursing lodge, during every phonecall. Sometimes I yell at him to stop torturing me but mostly I handle it calmly because I know he doesn’t understand/accept how ill he is, whereas I do.
This afternoon, we are doing something different. Most of my family – my mother, brothers, multiple nephews, nieces and various partners are gathering at my mother’s house for our traditional (but belated due to geographical distances) Christmas Eve dinner. I wasn’t going to get Anthony because it’s late in the day and I wasn’t sure if he’d be up to it and am still not sure. Then I thought I have to try. So the wheelchair taxi is picking him up from the nursing lodge at 5pm with an arrangement to pick him up and take him back at 7.30pm (at which time he is usually in bed).
Anthony is very close to my mother, brothers, sisters-in-law and their children so I hope it works out but, yeah, I do have a bit of that awful dread about the logistics.I am also excited! Of course it won’t all go perfectly – nothing ever does – but, on the other hand, you never know!
Oh, I have been so so excited about Anthony’s, and my, idea for a Christmas present for Ming this year. Ants and I have been discussing it for some time but have finally made the decision to do this (I can’t say what the Christmas present is in case Ming reads the blog; he hasn’t for some time, but you never know).
This will undoubtedly be the last time Ants and I collaborate on this kind of thing, for two reasons: 1. Ants’ dementia is getting worse; and 2. Ming is nearly 19.
I guess it is these two factors that punched me in the face this morning when I drove Ming into music school. I mentioned Christmas Day and said Ants would be coming home for the day and Ming’s reaction to this was so horrible that we ended up having our first row for weeks.
We made up for lost time.
While Ming and I were yelling at each other, I thought of Ming’s Christmas present – the only thing that has elicited a bit of enthusiasm from Ants for ages.
Since this morning’s row, Ming and I have had another, followed by a tentative truce in which he said, “We only have each other, Mum”, and I said, “You wouldn’t be here if it weren’t for Dad.”
And now he is in his room and I am in mine and Anthony’s phone isn’t working.
Ming asked me today what I wanted for Christmas and I said, “Wings”.
Tonight’s phonecall with Anthony:
Ants: I am just across the road, not far. Can you pick me up?
Me: It’s really late, Ants – I’ll see you tomorrow morning, okay?
Ants: But I’m not sure about this party.
Me: I can hear the nurse, Ants, and she is going to put you to bed right now. You’ll be fine and I’ll see you tomorrow.
Ants: Why can’t you come and help me?
Me: It’s 8.30pm, Ants.
Ants: Just for a cup of tea?
Me: I’ll be there at 11am tomorrow okay. Just try and go to sleep.
Ants: I miss you so much, Jules.
Me: I just saw you yesterday. Pull yourself together Ants!
Ants: I wanted to burst into tears.
Me: What? You better not do that – you are not a wimp. Stop it!
Ants: Okay, are you sure?
Me: Sure about what?
Ants: That you love me.
Me: Yes! How many times do I have to tell you this?
Ants: Okay, that’s fine. G’night Jules.
Me: G’night Ants – see you in the morning.
I think I am getting stronger and less affected by these sometimes bizarre evening phone conversations. Paradoxically, I have never felt so exhausted. This is probably because I am finally being more honest with Ants and have stopped tiptoeing around his constant home-coming wishes. He keeps reassuring me that he is getting better which is, of course, not true. Yesterday at the nursing lodge I couldn’t even manage to hoist him up from his chair to use the walker to walk me out and we both gave up.
My emotions seem to be having a rest and pragmatism has come to the rescue. I hardly ever cry now – it’s weird.
jmgoyder 