“Playing” dead (don’t worry – he’s fine!)
Gutsy9 (baby peacock for those who don’t know) likes playing dead and I keep getting a fright! Of course he is not really playing dead, he is just playing.
When Anthony was still living at home, he used to do this (not intentionally of course), and I would find him slumped in his chair, apparently asleep but looking as if he were dead. Sometimes I couldn’t wake him up but he would still be breathing. This happened at least once a day over the year preceding his admission to the nursing lodge. Since then, I have had to get the ambulance three times when this has happened on a home visit.
The cause? Advanced Parkinson’s disease. The cure? None.
Dementia is confusing
Anthony’s encroaching dementia confuses both of us and sometimes I am more confused than he is. That’s why I am so glad we have such an honest way of talking with each other.
When Ants was home yesterday, and I mentioned that he had dementia and he winked at me, I was surprised for two reasons. Firstly, his Parkinsons disease prevents him from blinking, let alone winking, so that wink was weirdly wonderful. Secondly, when he and I talked about the dementia of his PD, and I laughed about the taxi mishap, Ants was fine – not distressed and quite okay with the fact that he has dementia now.
I’m confused.
Anthony’s acceptance
One of the most difficult things about Anthony moving into the nursing lodge has been accepting this dramatic change.
Ming (now 19) was the first to accept this change willingly, whereas it took me nearly a year and mine was an unwilling acceptance laced with grief and guilt.
Anthony’s own acceptance has taken longer but yesterday it just happened and I am so relieved. This is how:
I booked the wheelchair taxi to pick Ants up from the nursing lodge at 2pm, then I rang his nephew who lives around the corner, and left a message that Ants would be home for a few hours.
Then, at 2.30pm, the nephew rang to say Ants was at their place! Apparently Anthony had convinced the taxi driver that our address was wrong and directed him to go to the nephew’s!
By the time the rather flustered taxi driver arrived here (around 2.45pm) I was in such fits of laughter that I could hardly speak as he got Ants out of the taxi. I hugged Ants, still spluttering with hilarity, so much so that Ming took over wheeling Ants to the front veranda while I paid the taxi driver who was now laughing too.
Okay, frivolity aside, the bemused taxi driver left, Ming went to milk the cows and Ants and I shared a beer and some snacks I had painstakingly prepared (chips). Here is our conversation:
Ants: It’s good to be home.
Me: So why did you go to the nephew’s?
Ants: I got mixed up.
Me: Yeah, you have a bit of dementia now.
Ants: I thought so. Am I staying the night?
Me: No!
Ants: Why?
Me: Because, Ants, you are too sick, I can’t lift you, and you need nursing care. How many times do we have to have this discussion? You have to accept it Ants – please!
Ants: You’re right.
Me: What?
Ants: You’re right.
Me: Okay, so the wheelchair taxi is coming to take you back in a few hours. Are you okay with that?
Ants: Yes, Jules (winking).
We then shared another beer, laughed again about the taxi mishap (well, I laughed and Ants looked at me as if I were crazy), then he began to droop badly and agreed to get the taxi earlier.
Acceptance.
PS. I’m off on my bike to tackle the road now!
The shortlist
I have discovered something wonderful and I’m sure Oprah will be contacting me soon to make me rich and famous.
Okay, we are all familiar with the list thing – shopping lists, chore lists, goal lists etc. But you know what the trouble is with these lists? They are too long!
My extensive research, case studies and social experimentation over the last three days have produced extraordinary findings! Yes, indeed, I have found the cure for lethargy!
The two candidates for this study were a teenage son and his mother who were becoming more and more depressed and, yes, lethargic, due to the grief they were experiencing when the husband/father figure went into a nursing home.
Neither the wife or son had been able to adjust happily to the new home dynamic despite having a close relationship. This was compounded by the son having to have major surgery and the mother losing her job.
Even a year after the husband’s admission to the nursing home, the son’s surgery and the mother’s loss of employment, all three were still struggling to accept the new status quo. All three were grieving in different ways and this resulted in numerous arguments with emotions running high, particularly between the mother and son. Both became exhausted and fell into a state of lethargy.
Then, three days ago, a plan was devised. Each day, the mother and son would write down a 3-point shortlist for the following day. This was done in a special notebook, almost like a contract. There would be one task that required both (we called that ‘mutual’), one task for the son, and one task for the mother.
The beauty of the shortlist is that it is ‘doeable'(is that a word?)
Okay, tongue out of cheek now – this is working, so watch this space!
Apostrophes
Anthony’s wife is Julie.
Anthony’s son is Ming.
Julie’s husband is Anthony.
Julie’s son is Ming.
Ming’s father is Anthony.
Ming’s mother is Julie.
We are each others’ apostrophes.
And Gutsy’s mine.
Hugging
Everything else about today pales into insignificance compared to the hugs. I hugged Anthony when he was standing up and he let go of the walker and hugged me back. Then I hugged him while we were tackling his lunch and he pushed the food away and hugged me back. Then, as I was about to leave, I knelt down on the floor in front of his chair to kiss him goodbye and he enfolded me in his arms and gave me a bearhug. He brought my face into the hollow of his shoulder, kissed my hair, held me ferociously and whispered, “Jules, I love you so much.”
Usually the wasted muscles in his arms make hugging difficult, but not today! I am home now and can still feel that goodbye hug and I am trying very hard not to cry.
The difference between what matters and what doesn’t matter
WHAT DOES MATTER
– Ming began harp lessons.
– Anthony said on the phone this afternoon that he’d been kidnapped, but I calmed him down.
– Some lovely friends came to pick the dying figs.
– Gutsy9 (baby peacock) is thriving despite his wonky leg.
– We found a clock man who has now fixed three of Anthony’s clocks, so the house is chiming again.
– I finished delivering details to our accountant for our tax return from last year.
– I am going to purchase an ipad tomorrow so I can access the internet in Anthony’s room and show him stuff.
– Ming and I are getting on top of the housework/yardwork etc.
– I only cried a little bit today, instead of a lot.
– The blog community is amazing.
– Ming has stopped being so bossy!
– Lots of other good things.
WHAT DOESN’T MATTER
– It doesn’t matter!
Farmboy 2
Ming was still in nappies when the dairy industry here was toppled by deregulation.
We were just one of hundreds of families affected by this and, without going into the politics, let me just say that it was devastating.
Previous to this, Anthony was a workaholic dairyfarmer (to me, those terms are synonymous.)
It was around this time that Ants was diagnosed with kidney cancer and had to have two operations. Our dairy days were over.
Ming never saw Ants in his prime, never saw Ants working, so he will never know the Anthony I knew.
And yet – and this is wonderful! – Ming is now milking for our beautiful neighbours and has been offered a full-time job as of July.
Like father, like son!
Farmboy 1
It was about two years ago when our lives (Anthony’s, mine, and Ming’s) altered dramatically. Here is an abbreviated list of events, in no particular order:
1. Anthony’s Parkinson’s became so bad that he required hourly nursing care during the nights.
2. I eventually got exhausted and was hospitalized for a few days.
3. Ming’s scoliosis required surgery.
4. I had to take extended leave from my university job as a lecturer.
5. Ming completed his last year of school.
6. We found that the farming family, whose property adjoins ours, was willing to lease our 100 acres for the correct rent.
7. We withstood the continuing verbal abuse from our previous lessee who we had already kicked off for negligence etc.
8. With Anthony’s approval, I contacted our lawyer to prevent the previous lessee from coming onto the property.
8. We accepted that Ming would have to have surgery.
9. We accepted that Ants would have to go into a nursing lodge.
10. Ming began his Certificate in music and, simultaneously, began milking cows for the same people we are now leasing to.
Our farmboy’s journey began!
Ever since Anthony went into the nursing lodge, and Ming had his spinal surgery, life-as-we-knew-it has altered dramatically.
jmgoyder 