No matter how honest and revealing a person is, either face-to-face or in a blog, there are certain things that are unsayable, secret, too personal.
There have been a couple of incidents at the nursing lodge lately where Anthony has behaved in a way that is disturbingly out-of-character.
The ungentling of my gentle husband’s brain is causing him to do and say things that are horrible. Taboo.
I am so sick of saying the same thing over and over and over and over and over again.
Today, when I got Anthony home for the afternoon, he asked, for the millionth time if he could stay the night. And for the millionth time, I reminded him that he was in the high care section of the nursing lodge and needed two people to lift him etc.
He looked at me, his eyes hard, and said, “So now I know you don’t care about me anymore.”
It was too much for me to bear and I lost my temper, interrupting this regular refrain with a few minutes of hysterical rage which woke us both up and, thankfully, ended in a mutually apologetic hug.
Then the wheelchair taxi arrived to take Ants home.
Refrain.
I got home from my mother’s place this afternoon thinking I should have stayed another night despite the care package. Then I found that Ming hadn’t eaten much and was down in the dumps. Then I tried to ring Anthony (and am still trying), to tell him I’ll see him tomorrow. Then I discovered that there was no toilet paper.
Now I don’t think the lack of toilet paper usually sends people over the edge, but I experienced 15 minutes of crushing despair until I spotted a quirky gift on my bookcase – Novelty toilet paper!
I cried half of it away but the rest will be used for usual purposes! Now I just wish I could remember who gave this TP to me.
A few years ago, before Anthony became so incapacitated with Parkinson’s disease, we used to go to a restaurant on the beachfront after every doctor’s appointment.
We went to this restaurant after his diabetes diagnosis and we ate apple pie with cream and icecream defiantly.
We went to this restaurant after his liver disease diagnosis and drank a bottle of wine defiantly.
We went to this restaurant after his prostate cancer diagnosis and ordered the banquet deal defiantly.
We went to this restaurant after his Parkinson’s disease diagnosis and decided to try the millionaire’s coffee.
Today I decided to take Ants to this restaurant (which now has new owners). It’s only a few blocks from the nursing lodge, so very convenient, but I was still really nervous because of the unpredictability of PD.
I became even more nervous when Ants had difficulty walking, with his walker thingy, to the car and getting in. But, once his uncooperative feet were in, and his seatbelt was on, I started to feel more optimistic.
And it was a success! Ants was able to use the walker to get into the restaurant and we had an ocean view, a half bottle of wine, some fantastic prawns and scallops, and some bits of conversation. His PDD kept making the conversation weird but every time he said something crazy, I just laughed and squeezed his hand and he squeezed back.
After we’d finished eating, I decided to order his favourite coffee, but the new owners of the restaurant had never heard of a millionaire’s coffee so I had to tell them how! The only trouble is that I couldn’t remember which three liqueurs went into it so I just asked them to use their imaginations.
They did a good job! Well I think they did – my head is still spinning – haha.
This afternoon I finally got hold of Anthony on the phone. I had tried numerous times during the day because I was worried about yesterday as a nurse had rung me in the evening to report a fall just after he got back from here.
You see, yesterday I got Ants taxied home again but earlier than usual. I wanted to see if a whole day home would work because usually it’s just for a few hours and he gets upset to have to leave so soon.
So he arrived at 11am which coincided with one of his medication times. I gave him the pill, and Ming, Ants and I sat out on the front veranda making the kind of smalltalk you make when one person can’t participate.
At around noon the drug kicked in and Ants was able to walk, with our help, into the house. We then watched a comedy on TV, and they ate pancakes with maple syrup and cream for lunch (Ming’s idea – yuck!)
By 1.30pm Ants had again become wobbly so I slowly shuffled him to the bed and he slept until 3pm. I helped him up and outside again and then Ming and I got him into the wheelchair ready for the taxi.
This might not sound like a wonderful day but it was!
But this afternoon’s conversation was a bit of a blow. When I finally resorted to ringing the nurses to help Anthony answer the phone, this is what we said to each other:
Me: Ants, I’ve been ringing you all day. Why can’t you remember how to answer the phone? I’ve been so worried about your fall.
Anthony: Well, there’s a reason for that – we don’t get along anymore.
Me: What! What are you talking about?
Anthony: The fence.
Me: Which fence?
Anthony: On farms, you know – broken fences.
Me: No, all of the fences are fixed now, Ants.
Anthony: But us – the fence I mean – it’s broken.
Me: I don’t understand what you mean!
Anthony: I’m sorry, I didn’t mean it, I was just joking. Jules, don’t cry please.
….
Okay, I got over this ghastly phonecall and we both ended up saying áll the I-love-you stuff.
I don’t think this fence can be fixed, but I guess it can be mended whenever we fall on it.
When I was 12 and struggling with my all-over-the-place thoughts and feelings, and worried that I was abnormal, my mother wisely reassured me that I was simply suffering from mixed emotions and that this was normal for 12-year-olds.
At the time, I found it immensely comforting that there was a name for my ‘problem’ – mixed emotions.
Now, all these years later, it is happening again – that simultaneous sad/happy thing but of course it doesn’t sound very convincing when you decline an invitation to lunch, for instance, by saying, “I can’t today because I am sick with mixed emotions.” A migraine is a much better excuse.
Yesterday afternoon, Anthony was taxied home and the handful of friends I’d invited (he doesn’t cope well with more than a handful) all arrived with food and drinks, and I was filled with happiness. It was a delightful afternoon and resembled the hundreds of delightful afternoons when Ants was well. I used to be amazed at how Ants would never sit down, would constantly replenish half empty glasses, would shout with laughter at his own anecdotes, turn the music up and dance, bear hug me, wink at me, grin at me. The good old days.
Of course now that Ants can’t stand up easily, or wink, or grin, or shout with laughter, or dance, or hug, or even follow an anecdote, let alone tell one, it’s different. Don’t get me wrong – it was still wonderful, but when the taxi arrived to take him back, the sad kind of stole my smile, and our little crowd went from noisy to quiet.
After Ants had gone, the frivolity resumed, but at a lower key for me and, later in the evening, when everyone had gone, I felt such a surge of grief and nostalgia that I had to remind myself to breathe.
Mixed emotions.
(But at least I didn’t injure the taxi driver this time, even though he mistook me for Anthony’s daughter!)
I keep trying to embrace the idea of death, but I can’t imagine Anthony gone.
So I’m beginning to understand this kind of grief via the blogs of friends who grieve for loved ones.
It might be my turn next but I’m not sure…. Death-defying?
My best friend – Anthony.
I have been trying so hard lately to be positive, but tonight, a nurse rang me asking me to try and convince Ants to take his pills. Eventually my voice on his phone worked and the nurse was able to give him his pills.
Ants was distressed and confused and aggro: this scared me.
What a wonderful nurse to ring me like that. I am so relieved to know that Ants is okay in this nursing lodge, but I am constantly anxious for him now that the dementia is happening.
Ants is coming home for the afternoon tomorrow so I’ve invited a few friends. Oh I so hope it all works out!
[Note to blogfriends: I can’t keep up with reading blogs at the moment, but will catch up soon.]
When a young woman marries a man who is 23 years older than she is, the term ‘gold digger’ tends to fly through country towns such as this one, and sometimes insinuates itself into the gossip of all and sundry.
Ming was conceived on our honeymoon (March 1993) and born a very decent 9 months later (January 1994) but, by this time, I had already been labelled as a gold digger. I wasn’t happy about this but there was nothing I could do about it. Anthony laughed the gossip off, and so did I, eventually.
So imagine my shock when my friend – JL – informed me yesterday that she had recently heard a story from her brother-in-law (who is friends with the bus driver at Anthony’s nursing lodge) about me!
Me: What?
JL: Well the bus driver told N that they sometimes take the men’s group for a visit to a farm that has peacocks.
Me: Yes – it’s a wonderful arrangement because they bring tea and scones and feed the birds and it’s a great way of getting Ants home for a couple of hours.
JL: But the bus driver said that every time they come to the peacock farm, the young lady who owns the farm starts kissing and cuddling one of the residents – a bloke called Anthony – and she is all over him, obviously after his money.
Me: What?
JL: It’s okay, N. told him you were Anthony’s wife.
Me: Oh thank goodness – what must they have all been thinking!
I’m guffawing too much to go out for my daily gold-digging expedition!
I seem to be developing an unintentional talent for slapstick comedy especially when it is a wheel-chair taxi situation.
This afternoon, Anthony came home for a few hours and it was great until he became ‘wobbly’ (that’s our word for when the Parkinson’s disease gets the better of him).
Anyway, the taxi arrived to take Ants back to the nursing lodge and there was a flurry of activity as Ming and I got him into the wheelchair, and the taxi driver and an apprentice got him into the taxi, and I tried to find my elusive wallet.
Once all of that was okay, and I’d said goodby to Ants, I thanked the driver, shook his hand and closed his door so he could drive off.
He was such a kind person so I thought he was yelling at me (over the sound of the taxi engine) that I was such a kind person too, but he just kept yelling.
I had slammed the door on his foot!
jmgoyder 