As indicated in a previous post, whenever I get to the end of my tether, the first person I talk to is Anthony – always.
I think it is remarkable that when I am the needy one, he becomes incredibly supportive and completely forgets his own neediness.
This is Malay, our only remaining rooster. He has Anthony’s tenacity!
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.
When Anthony suddenly transformed from a macho machine into a rose-buying romantic all those years ago, it was a massive shock to me. As a macho machine, he was never demonstrative or loving or generous and I was so used to this that the ‘new’ Anthony took a bit of getting used to. In the nearly 20 years since we’ve been married he has given me the most beautiful gifts: pearls (a few strings), silver bangles (around 20), expensive perfume, a carriage clock, an Omega watch, a couple of other watches, an antique lithograph (well he had wanted this himself), my first ever electronic organizer, my first laptop, a min-tv for my office, a beautifully framed picture of me at my graduation, two antique cameo broaches and the list goes on. Most of these were surprises but over the last few years, since he became too ill with PD to drive, he would tell me to go and buy my own Christmas and birthday presents with instructions like “Go and buy yourself a nice frock” which is ludicrous of course since I haven’t worn a dress since I was around five years old so I would come home with expensive jeans or boots instead! It wasn’t as magical to have to choose my own presents but after a year or so I began to look forward to this. I would ring him from whatever shop and tell him I was trying to choose between this bangle and that bangle and he would always say, “Get the best one, Jules.” So I would!
Don’t get me wrong. When the dairy industry was thriving and I was working, we were comfortably off, but not wealthy and Anthony, having always been extremely scroogy careful with money, continued to astound me with his birthday and Christmas gifts to me. But perhaps the best and most extraordinary gift was his ability to say “I love you, Jules.” The first time he said this, a few seconds before he proposed marriage, I laughed because I thought he was joking. For him the word ‘love’ was a definite taboo and whenever I had used it on him he had shrugged and grinned, but never reciprocated. Since the first time he said these words, he has said them every single day of our marriage and they have not lost their power.
Lately, love has become the main topic of conversation for him. When I am in the nursing lodge, or he is on a visit home, or on the phone, he talks about this big love we have for each other and his eyes smile even though his mouth can’t. He loves talking about love, so much so that I sometimes say, “Yeah, okay, I get it!”
After months of rather mopey misery on his part, Anthony seems to have finally accepted what is, so when I see him, his eyes light up, and he almost yells, “Jules!” He does this on the phone too and seems to have stopped begging me for the impossible – to bring him home to stay. Our conversations are lighter. Of course the confusion and disorientation of PDD is still there but this love-talk seems to bypass that and now, when I leave the nursing lodge, I say goodbye with a smile because I know he knows that I am in love with him too.
A few years ago
I got home from my second visit to Anthony at the hospital today to find that Ming had put the birds into their pens, fed all and sundry and let the dogs out for their second run. Jack (the Irish terrier) is all long legs and somersaulting enthusiam and Blaze (the mini-dachschund) is a desperado for hugs, so when I drove into the garage, they both greeted me with wet noses and gleeful barks until I hugged them both. Beautiful.
Then Ming said, “Where is my food?” so I put him in the chookhouse. It was a bit of a tight squeeze to begin with until he agreed to fend for himself tonight as I was pretty tired. Then I rang the hospital and, attempting nonchalance (since I had already bothered so many nurses today about Anthony’s meds. etc.) I was put onto a lovely nurse who handed me to a very strong-voiced Ants and I said goodnight to him without tears in my eyes. I had met this nurse earlier in the day when Ants had somehow clambered out of the bed and sliced his leg open and, as she was dressing the wound, I explained about the PDD and his previous post-op. behaviour. I did this in front of Ants because we have this unspoken honesty policy I guess.
Actually, no, not quite, because I am not sure whether to tell Anthony about his dementia or not. So far, I just say it’s Parkinson’s when he asks why this and that. I guess we will figure it out eventually. Tonight his left eye was swollen and blueblack due to the skin cancer being so close to it but the scar looks good and clean and it is such a relief to be rid of this horrible thing. Tomorrow I will take him back to the nursing lodge which might be tricky because he thinks I am bringing him home.
1. With a heart full of love and gratitude to Ming who had mowed lawns all day, then fed and put the gang away, I re-heated my chicken noodle soup made from scratch (yes, I boiled a chicken, boned it, removed the disgusting fat the next day, added noodles, vegetables and spices and voila!)
So tonight is the third night of the chicken soup. On night 1, Ming said it was like heaven; on night 2, he said it tasted even better. Alas, tonight, he said, “Mum, this dinner thing is becoming such an ordeal for me.”
Brat!
2. I rang the hospital this afternoon to confirm the booking for Anthony’s skin cancer operation tomorrow and not only was there no record of this, there was also no record of the original date. So I had to make several more phonecalls to figure out if Anthony and I were real people etc.
I just rang again and apparently we do exist so that is a great relief.
3. At 4pm I answered the phone hoping it was the peacock rescuer man but it was Ants who had asked a nurse to ring me. He was completely disorientated and kept begging me to love him again. It took a long time to reassure him about where he was, and remind him about tomorrow’s operation.
I said “I love you, Ants” so many times, until he finally believed me.
Anthony’s skin cancer operation has suddenly been fast-tracked to tomorrow (Monday) – yikes, I only got the phonecall Friday. Okay, for those who don’t know this, Anthony has a very nasty skin cancer right next to his left eye and it is painful, so it has to be cut out. This has to be done in hospital so he needs to be there by 9am and I still haven’t decided whether to get the wheelchair taxi and meet him there or take him myself. His mobility at this time of the morning isn’t good.
Over the years, Anthony has had multiple skin cancers either burned off (with that nitrogen spray stuff) or surgically removed. Many of them have been squamous cell carcinomas, not melanomas, which is good. He was born into an era where hats were worn haphazardly and sunscreen probably hadn’t been invented and, when I met him, he was in the habit of sunbaking after lunch to get a tan. Inna (his mother) would often ask me where he was and I would tell her he was lying out near the fig trees and she would tut-tut and say that was fine as long as I wasn’t sunbaking with him – ha! At the time, that would have been a dream come true for me but I am glad I didn’t as he has now had over 50 skin cancers burned off and several requiring surgical removal.
So tomorrow will be an adventure of sorts because of how his PD, and now PDD, is likely to affect the ordeal. The surgeon is not going to do the procedure with a general anaesthetic (too risky) so Ants will be given a local anaesthetic and sedation. The operation will take about an hour or so. I have to admit that I am absolutely dreading this because of what happened last time.
Last time, the skin cancer was on top of his skull so the pain he suffered afterwards was excruciating and his medications for PD were temporarily lost and he missed a dose or two: result, he went totally loopy and had to be on 24/7 watch. It was a nightmare just after the operation so I raced home to get his spare meds., raced back and sneaked him some and he was okayish for awhile but (this was a few years ago when he was more mobile) he kept trying to wander out of the hospital – argh!
Tomorrow I will have to arm myself with secret drugs – ha – and a double dose of patience with both Ants and the system. It is only going to be a day procedure this time and I’m not sure if this is a good idea or a bad idea – maybe he should stay one night in the hospital? I wish I knew. I have decided to take my box of paperwork in as I will be there for hours.
This is probably my overactive imagination but sometimes I can feel Inna’s smile of approval, almost as if she is kind of watching over her son, and me, and Ming. This is a good feeling.
During this strange and difficult year (Anthony going into the nursing lodge, Ming’s spinal operation, and my loss of employment), Ming and I have somehow emerged from the quicksand of my grief and his rage and we are beginning to cope better. This evening we began a list of things we have to do, and buy, to keep this place ticking along properly. It is still a shock to me that Anthony is no longer at home and in charge of these things but, as Ming rightly pointed out tonight, this hasn’t been the case for some time.
Ming’s catchcry is always ‘teamwork’ and my response is always reluctant because he is so bossy. We have, however, dealt with our tussle with a truce handshake so tomorrow he will do the lawns and I will do the bills and other paperwork, and we will not argue. We will begin to transform our disorder into order, bit by bit by bit, without Anthony.
It is this withoutAnthonyness that seems to have suffocated my energy. I don’t feel quite present and I keep losing all of my todays. But Ming is okay and much stronger at the moment and tonight he asked me to lean on him more so I agreed. But I won’t really do this of course because I have to pull myself together so that I don’t cripple him under the weight of a temporary bout of despair. Without tomorrow, today would sob itself to sleep.
There is (I think, but I’m not sure) always, always, always, hope.
The other day a friend mentioned this so I googled it and am stunned because it explains what has begun to happen to Anthony every evening! Other terms used are ‘sundowning’, ‘sundowner’s syndrome’ and ‘sundowners syndrome’. Here is a link to one ‘take’ on this very real problem.
http://www.caring.com/articles/sundown-syndrome
Sundown syndrome is an offshoot of dementia and usually happens as the sun goes down and light turns to dark, but it can also happen at sunrise. Some theories suggest that it has something to do with the 24 hour ‘brain clock’ that responds to changes in light. Other than this it seems to be a bit of a mystery. A person with dementia may be calm during the day but become agitated in the evening, sometimes quite dramatically.
Symptoms can include things like agitation, restlessness, aggressiveness, increased confusion, hallucinations, paranoia and a whole gamut of ‘out-of-character’ behaviours. This is the best explanation I have found yet to explain the last few weeks of Anthony’s increasing bewilderment and misery in the evenings.
Sunset, for Anthony and many others, is not beautiful.
jmgoyder 