Love story 106 – Hugging and kissing
I went into the nursing lodge this afternoon armed with red wine. Don’t get me wrong here; I am just attempting to emulate the arvo drinks we used to have – that pre-dinner ritual. Obviously Anthony can’t have more than a tiny glassful and I just have a light beer. We made friends with a new resident whose son and daughter-in-law were visiting and gave them what was left of our bottle of brandy (I fetched it from Anthony’s room). It was fun – sort of. A couple of the nurses were hilariously encouraging of our little pub crawl.
I helped a nurse help Ants to the dinner table then hugged and kissed him for the millionth time and left. On my way home I realized how hugging/kissing beats the hell out of red wine. Yeah, I know that is commonsense but I have never had a lot of that – still learning!
Love story 105 – Falling
My tentative plan for today was to pick Ants up and take him out for lunch or for a drive. It was to be a bit of an experiment to see if I could do it and it filled me with dread because he is often so immobile that am scared that he will fall and I won’t be able to pick him up, as happened numerous times when he was still here at home.
I rang him to confirm and, as usual, I had to let the phone ring out twice before he managed to answer it. “Jules,” he said, “Jules, Jules, Jules, Jules….” Then there was silence even though he was still on the phone. I yelled into my own phone, “Ants! What’s wrong?” but he said nothing. Nothing. This terrified me. Was he upset?
So I hung up and dialled the nurses and told the one who answered the phone that something was wrong with Anthony. She said she would go and check. A few seconds later, I rang him again and this time he spoke a bit more and told me he had had a fall. He was a bit incoherent and confused except he did remember our lunch date. “I don’t think it’s a good idea now, Ants,” I said, and he agreed. He sounded quite shaken. I could hear the nurse in the background which was comforting.
Ants is falling more and more often because when he is mobile, he races and forgets his walker and, bang, down he goes. Last year, pre-nursing lodge, this kept happening and one of his worst falls happened when I went up to the local shop for something and begged him not to move from his chair. I was only gone 10 minutes but when I got back I discovered him lying prone and twisted in our little vegetable patch. He looked dead and I got a terrible fright. It took me nearly half an hour to get him up onto his feet and, though grazed and bleeding from his face and knees, he was otherwise uninjured. It then took another half an hour to get him back into the house because his legs weren’t working.
Mobility for people with Parkinson’s Disease is a strange and unpredictable thing. The typical leaning over posture doesn’t help with gravity. When Anthony is mobile, he almost runs; when he is immobile (which is most of the time now) he can hardly even move one foot after the other without assistance.
I think our days of going out to lunch are well and truly over, and were over long ago, but Anthony keeps hoping and I keep wishing.
And he keeps falling.
The happy tears!
[I love remembering this kind of thing!]
Ming and I had gone to Bunbury specifically to search out and buy the latest Beyblades DVD, number 2, which had just come out. He already had number 1 so he was terribly excited that I was going to buy the next one for him. He loved these not-too-often, special occasions which he called “shopping spwee days.”
As usual it took a couple of hours to find it as two of the three mains shops that stocked that sort of thing had already sold out. But when we hit the third shop, hurray! Not only did they have Beyblades 2, they even had Beyblades 3!
Then came the crunch. As Ming held the two DVDs in his hot little hands, I told him that he had to choose one. He looked up at me longingly, a deep frown creasing his little forehead, then he looked back at the DVDs. “It’s a vewy differcult desishun, Mummy, isint it?”
I explained that I couldn’t afford both of them and that, even if I could, I didn’t want him to turn into a spoiled brat.
“But I haven’t been nawdy for millions of days, Mummy!” he said, trying to outmaneuver me with a winning smile. But it didn’t work. Well, not at first.
“One DVD and that is that!” I said in a mock stern voice.
“Okay,” he said with a big sigh. “But I havta siddown to fink.” With that, he plonked himself onto the ground and studied every detail of each DVD case for a good ten minutes.
Finally he leapt up and yelled, “Quick Mummy, I done my desishun!” He was obviously wanting to move fast before he changed his mind, which had happened on other occasions – sometimes too late.
Ming had chosen Beyblades 2,but his expression of deep regret as he put back Beyblades 3 got to me, so I secretly picked it up again when he wasn’t looking. I told him to go and check out the other DVDs while I made the purchase. I’d decided to surprise him by buying both.
After putting the package of DVDs in the car, we went to Hungry Jacks which was always part of the “shopping swee day.” Munching on his chips, Ming looked at me thoughtfully. “I fink I shoulda got numba 3, Mummy”. Again the frown.
“Maybe next time,” I said.
“Someone else’s widdle boy’ll get it,” he said sadly.
In the car, before we took off for home, I suggested he take a look at the DVD, so, excited again, he opened up the package. I glanced over to see the shock of his discovery washing over his face, but he didn’t say anything. He just looked up at me, bewildered.
I wondered why he was so quiet, then I saw that his eyes were filled with tears. “Ming!” I exclaimed, “What’s wrong?”
“I’m cwying from happiness, Mummy, look!” He wiped his eyes with the collar of his shirt and showed me the wet patch.
“Weal dwops! That never happened to me before!”
Ming was so blown away by his happy teardrops, that he nearly forgot the extra DVD. I was quite touched.
But as I started the car, he recovered (with remarkable speed, I thought later) and said, “When is numba 4 coming, Mummy?” with a mischievous grin.
Love story 104 – My beautiful husband
I finally got hold of Anthony on the phone this afternoon, and again this evening, and he was fine that Ming and I didn’t visit today. I told him about the counselling session and how Ming’s rage was against his illness, not him and he understood.
It is 32 years since I fell in love with him and nearly 20 since we got married and produced the beautiful brat. It has definitely been an interesting relationship which all three of us recognize, and the heartbreaking stuff is relatively recent. No – that isn’t quite accurate but at the moment I can’t talk about that stuff.
Anthony was always the absolute life of the party, the loudest laugher, a friend to everyone who came to visit. As a teenager, I was half appalled and half in awe of his amazing, charismatic presence. His ability to embrace friends and relatives in his big muscly arms. I miss those days so much and Ming loves to hear about an Anthony he never knew.
My beautiful, patient, resilient, suffering husband. Missing him is like being smashed in the face with my own clenched sobs over and over and over again.
Good questions!
When do you last remember being a kid?
Today, when the counsellor asked Ming this question he had to think for a long moment before admitting that it was in primary school – seven years ago.
When do you last remember having a dad?
The answer was the same – primary school. Ming remembers Anthony picking him up every day when I was at work. It was Ming’s first year in high school when Anthony’s health began to deteriorate dramatically.
Of course these questions were asked after Ming and I had already divulged various details about Anthony’s illnesses, my grief and Ming’s anger. I had shed tears about Anthony, Ming had explained his wanting to be in control and we had laughed a lot. The counsellor was surprised by our mutual willingness to seek help. She said that usually one person is willing and the other reluctant. Ming immediately said, “I just want to fix our relationship.” More laughter.
It was also mentioned that Ming and I are more like siblings or partners than a mother and son – yes. It was good, it was great, it was exhausting so we came straight home instead of going to see Anthony because he is at the heart of the conflict between Ming and me and it seemed best to take our lighter selves home rather than risk a visit that would make Ming heavy with anger and me with sadness. Selfish? Yes. I have already tried to ring Ants but no answer so I guess he has been seated out in the sun which he loves. When I do get hold of him I will tell him about the appointment and reassure him that I will be in tomorrow for a red wine.
On the way home Ming asked his own good question:
Why didn’t the counsellor give us the answer to our predicament?
“That’s next week,” I said, laughing my head off!
Hope
In the morning, Ming and I are going into town to an appointment with someone who will help us to cope with each other, the farm and Anthony’s deterioration.
I told Ants about this appointment when I saw him this afternoon with my red wine and he wanted to come along too but I said I couldn’t take him as it was too early in the morning etc. etc. and then I finally admitted to him that Ming’s anger would only be exacerbated if Ants were present.
“So he hates me then,” Anthony said, spilling his wine.
“No, Ants, he hates both of us at the moment,” I said.
“But why?”
“Because you are so sick and I am so sad.”
“Okay – just come here afterwards.”
And we will.
Love story 103 – Red wine relief!
Success!
Finally, one of my ideas worked!
I took a bottle of red wine into the nursing lodge and shared a sip with Anthony before dinner and it was GREAT!
Yeeha!
Love story 102 – Rooster routines
This Anthonyless house has become a place of procrastination and rage and lassitude. The garden is overgrown, the house needs a sweep, the washing keeps getting rained on, and the meals don’t happen.
This Anthonyless house has lost its routine because he is no longer living here and motivating us to keep up. In very different ways, Ming and I are both in that limboland of depressed energy – he rages and I cry and, no matter how many times we climb up into the sunlight, we keep falling back down into the pit again.
Today, I was going to cook Ming a breakfast of bacon, eggs and tomatoes but, instead, I slept in.
Today, Ming was going to mow the lawns but, instead, he is playing his guitar and watching a movie in his room.
Today, I was going to visit Anthony in the nursing lodge at 11am but I’m not going in until 4pm now because …
EPIPHANY!
If I go in at 4pm with a bottle of red wine, I can emulate what we used to do every afternoon at 5pm at home; we would routinely have a pre-dinner drink. Yes! It has to be 4pm because in the nursing lodge dinner is at 5pm; there is a routine! So, if Ants and I have a drink together and a few olives at 4pm maybe he won’t get this confusion thing later in the evening after I’ve gone home. I could make this a regular routine thing that we both could look forward to!
Perhaps, if this is a regular routine, things will improve emotionally for all three of us? I don’t know. Some of my other haphazard ideas have gone to the wall – showing him my blog didn’t work, wheelchair-taxi rides home didn’t work, taking paperwork in to do with him didn’t work etc. etc.
It wouldn’t have to be every day. I haven’t been able to get in every day anyway, so it could be every second day. I could work this around picking up Ming from music school and his cow-milking schedule somehow. Yes!
I have to give the credit for this routine epiphany to Malay, our biggest and most regular cockadoodledooer! He says that routine is vitally important in terms of organizing the day.
Malay: I crow at 4am and 4pm on the dot. It keeps me sane.
Me: Okay, so how do you know what the time is?
Malay: Julie, I am a rooster!
Me: Oh sorry.
Malay: When you go in this afternoon, I will be crowing for you and Anthony. After all, you both raised me from a chick.
Me: Thanks, Malay.
This Anthonyless house is full to the brim with Anthony – roll on 4pm!
Love story 101 – “Where am I?”
Parkinson’s Disease is different for every single person who has it. Its many and varied forms, and its hour-to-hour unpredictability, is maddening for both sufferer and carer.
Last night, at around 6pm, I received a phonecall from a nurse from the nursing lodge where Anthony now lives and she told me he wanted to talk to me. I was a bit alarmed that they had rung me. Once he was on the phone I could hear the dreadful fear of confusion in his voice and I kept reiterating that he was safe and at the lodge. But he kept saying he wasn’t there, he was somewhere else and wanted to come home. Luckily the nurse stuck around and she and I both reassured him.
Tonight I made my usual 7pm phonecall to say goodnight and Anthony was once again disorientated and not sure where he was so I said I would hang up and ring the nurses to tell them he was confused again. Anthony said,, “Jules, don’t tell them I’m crazy!” Anyway, it all worked out with a nurse by his side when I rang him back, but he still didn’t quite know where he was.
My love for him has become like blood; every time he bleeds, so do I. We had such a beautiful, turbulent, fantastic love and now it whimpers or howls – unbearable.
I will go in at my usual time of 11am tomorrow but first I have to swallow this horrible sorrow, put a grin on my face and buy chocolates.
Parkinson’s Disease is different for every single person who has it. Its many and varied forms,and its hour-to-hour unpredictability, is maddening for both sufferer and carer.
jmgoyder 