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.
Home is where the heart is
I had planned to get Anthony home today, then decided to wait until the weekend so I could also invite some friends to see him. So I left a message with the nursing staff this morning, then rather guiltily rang him this evening. I needn’t have worried because Anthony thought he was home anyway. This is how our rather strange conversation unfolded:
Anthony: Jules, I’m at Bythorne [that’s the name of our farm]
Me: Are you?
Anthony: Yes, where are you?
Me: Well I thought I was at Bythorne.
Anthony: That’s okay then.
Me: Why do you think you’re at Bythorne, or are you kidding?
Anthony: I don’t just think I’m at Bythorne; I AM at Bythorne.
Me: I thought you were at the nursing lodge.
Anthony: No, I’m at Bythorne! When are you coming home?
Me: I won’t be long.
Anthony: That’s good. I miss you.
Me: Well you sound pretty happy.
Anthony: I am! I love you, Jules.
Me: I love you Ants.
The dementia that is part of Anthony’s Parkinson’s Disease always kicks in after sundown (I blogged about ‘sundowner syndrome once before). But this is the first time he has thought he was at home.
I felt a surge of joy about this because he sounded so happy, but it was a bit surreal.
Party fizzog
Oh well!
Due to a combination of things (Ants is having digestive issues, the nursing lodge is experiencing a mild flu outbreak, and it is another extremely hot day), I spent most of the morning ringing the people I’d invited to say the party was off. After all that last-minute planning and stressing, I have to admit I was rather relieved – ha!
Instead, Ming and I went in see Ants. We we will get him home tomorrow, which is his actual birthday.
It was still a good day and we took some photos of Ming’s new ute!
Anthony’s 77th birthday!
On Monday, Anthony turns 77, so tomorrow he is coming out for the afternoon.
On impulse, I rang a few family and friends and all said yes, with a few maybes.
I just counted up how many people are coming and it’s around 50. If the maybes come, it will be 60.
Panic!
Enough is enough
I never intended for this blog to become so personal and I certainly didn’t intend for it to become so sad. It was a blog about our adventures with birds – a way of cheering the three of us (Anthony, Ming and me) UP!
How was I supposed to know that Anthony’s Parkinson’s would escalate, then collide with Ming’s spinal surgery? How was I supposed to know that we would have to find a nursing home, that I would have to resign from my job, that I would have to figure out Ming’s post-op. requirements, that we would lose many of our birds to foxes?
How was I supposed to know what last year would entail – Ming’s anger, Anthony’s sorrow, my despair? Obviously I don’t have very good foresight.
I do, however, have pretty good hindsight and tonight I have realized that enough is enough, that I am not going to allow myself to die because Ants is dying, that I am not going to allow myself get angry because Ming is angry, that I am not going to allow myself to sink into this self-pitying quicksand of despair.
Apologies for recent posts.
Enough is enough!
Disengagement dilemmas
It is nearly 1.30 in the afternoon and I haven’t yet rung Anthony. This is very unusual.
Usually, I ring him multiple times per day beginning with the morning phonecalls. When I say multiple times, I mean multiple attempts. The big, easy-to-use mobile we got Ants goes to message bank after exactly 13 rings, so my system is to let it ring 12 times, hang up, and do the same thing a couple more times. I usually get him on the third try.
But, even when he answers the phone, he often can’t hear me because he is forgetting how to hold the phone to his ear, so I have to yell my side of the conversation. And sometimes, he starts pressing numbers on his phone and unintentionally cuts me off, so I have to begin the whole ritual again. I often have to ring the nurses to help Anthony answer his own phone.
I do this phonecall thing in the morning, in the afternoon, and in the evening regardless of whether I am visiting him or not (an average of every second to third day now).
When it works, our morning conversations are light-hearted (Ants is lucid), our afternoon conversations are mournfully hopeful (he is sad and wants to come home), and our evening conversatioms are bizarre (he is confused).
It is nearly 1.30 in the afternoon and I haven’t yet rung Anthony. I will wait, with my hand poised near the phone, with his number carved into my brain, with my heart splintering, until 4pm.
Why?
Because otherwise I will go stark, raving mad.
This is a very heavy love.
Moments
I have never before been so attentive to, and appreciative of, a single moment. Moments are much more pleasant than hours.
Anthony was taxied home this morning and, even though his 11am drug hadn’t quite kicked in, Ming and I managed to get him into the kitchen because it was too hot outside.
The three of us had a rollicking time with a little bit of champagne thrown in. Then Ming’s two best mates dropped in to see Ants. I knew Ming had invited them, but I was heartmelted that they bothered, these two amazing young men! Ants was delighted to see them and we all spent an hour or so, still in the kitchen, bantering, listening to Triple J, and eating vegemite on toast.
By this time Ants was just able enough to go for a drive with Ming in the new ute so the friends left and Ming took off with Ants. By this time Ming’s demeanor had altered from grinny to grumpy. By this time I knew I would have to order the taxi for 3pm, not 4pm, which I did.
Ming and Ants got back and I helped Ants out of the ute and walked him to a chair on the front veranda. He was okayish and suggested a beer! I went into the house to find Ming fuming that Ants had dribbled in the ute (drooling is common in Parkinson’s Disease). I bit back and we had a rather nasty altercation.
And then, just as I was about to join Ants on the veranda for a beer, a taxi arrived – one hour early – 2pm! The shock and disappointment was terrible for Ants and the only way I could make it okay was to say we’d do it again tomorrow.
So it was a bit of a mishmash of a day. On the other hand, the good moments far outweighed the yucky ones. And the best moment was when Ming made Anthony smile!
The struggle
I am half elated and half deflated in anxious anticipation of Anthony coming home for the day tomorrow.
It will be a difficult day, and no amount of positive thinking will change that because the Parkinson’s Disease owns him now.
Two nights ago, I rang him and he said ‘they’ were going to blow him up and I wouldn’t be able to find his pieces. I could hear a nurse calming him down.
One of our best friends is going through the ordeal of chemotherapy and radiotherapy for cancer.
Several of my blog friends are battling severe health issues and one has just lived through the death of her daughter.
I am scared because I dón’t want Anthony to come home tomorrow because he is so heavy with illness.
It’s the old Ants I want – and so does he – ironic.
Home
When I arrived home this afternoon, from my 3-day holiday at a resort, something went a bit skewy in my mind.
Despite a wonderful reunion with Ming and Gutsy9, there was a thudding crash of disappointment because Anthony doesn’t live here anymore.
It isn’t home without him.
jmgoyder 