I have decided that it is way too long since I have met up with someone who I used to be closer to, but have lost touch with. This is entirely my fault, as she is always there, no matter what.
Tomorrow, my plan is to surprise her; my alarm is set for 5am so that I can catch a few moments with her before she goes on her daily journey. I hope she will remember me and the good times we used to have. I hope she will say yes to me when I ask if we can be friends again.
Her name is sunrise.
Here in Australia we are two days away from spring after a very wet winter. Monday is the first day of spring and I am going to celebrate but I’m not sure how yet. Perhaps I will buy another camellia tree like this one from which I take flowers in to Anthony every second day.
The other day I gave one each to the two women I play cards with during my volunteering hours. Gift-giving rules are very strict at the nursing home but I figure flowers can’t do anyone any harm, although Nat would prefer the chilli-garlic olives I used to bring in until reprimanded (risk of choking etc.)
And here is Ming with his little second-hand car, ‘Fran’. He has named her ‘Fran’ after the character in the comedy series Black Books, one of our favourites. As it happens, I am about to take this series into the nursing home to play on Anthony’s new DVD player. I took The IT Crowd in a couple of weeks ago and, even though Anthony slept through some of the two episodes I played, he woke up with a bit of a smile every time I guffawed, which was often.
The strange phenomenon in which Anthony sometimes thinks that what is happening on the television screen is happening in his room comes and goes. I only discovered this by accident one evening months ago when I rang him and he asked me to pick him up from Burekup (a nearby town) from an Aboriginal ceremony. At first I thought this was him hallucinating (a Parkinson’s disease symptom) but then I heard the background noise of his television which turned out to be a documentary about an Aboriginal ceremony; I could even hear the chanting! Now that we are watching Midsomer Murders every weekday afternoon from 3.30 – 5pm (another one of Anthony’s favourites, mainly because of the English countryside, the classic cars and the big old houses – not the murders), I sometimes worry that he will get scared. But seeing as this is probably the most benign ever of murder shows, it never happens and anyway he can no longer follow plots. I have gotten into the habit of checking the television guide before I leave every night and leaving the television on a channel that isn’t going to be showing a horror movie, or something like that. Ironically, this is usually the ABC news station.
Well, I better get going!
In my last post, I wrote a bit about how, instead of taking Anthony out for drives or bringing him home for the day, I have begun to make myself home in his room in the nursing home. For those who don’t know, Ants has advanced Parkinson’s disease with encroaching dementia, advanced prostate cancer and several other conditions. He is 78 and has been in the nursing home for nearly two and a half years. I have already blogged about the heartbreak of that mutual decision, and written about the ongoing ups and downs since then.
Several weeks ago, I realized that I had to stop getting Anthony up and out, and back home, and visiting friends and relatives, and going to restaurants etc. because I could no longer lift him in and out of the car, wheelchair etc. Well I could actually, but the physical strain and emotional stress of all of this maneuvering was taxing for both of us, and Ming too of course.
You see, all of the above jobs were infused with a panicky anxiety. Will the pills work today? What if I can’t get Ants to the toilet in time? Will he try to walk around the farm/restaurant and fall again? What if I have to get the ambulance out to the farm? Will he be too cold and insist that every heater is on? Will Ming cope? Will I cope? Will Anthony cope with going back to the nursing home after being out and about? Will there be more tears than we have already cried?
So, almost as an experiment I guess, I began to spend more time in the nursing home, something I couldn’t have done even a year ago – too boring, too sad, too scary, too confined, too uncertain – I hated it. But gradually, over many weeks now, this has become the norm and the fact that I am spending several hours a day with Ants in the nursing home means that he is no longer so desperate to come home and often, by late afternoon, he thinks he is home.
I keep long-lasting stuff, wine and snacks in one of Anthony’s cupboards, bring a favourite food every day (blue cheese, chocolate, olives etc.) and sometimes it’s a little bit like a party. If the heater isn’t on, I turn it on, put a blanket on Anthony’s legs and do up his jacket up (he is always cold). Then I turn the television on to whatever our program is for the day (Master Chef, Midsomer Murders, Neighours). During the commercial breaks, I mute the TV so we can talk but lately Ants is having a bit of trouble with speech so I have to help a bit. Yesterday he couldn’t get the sentence he wanted to say out so I told him I could read his mind and not to worry. And I can read his mind.
But then his words came out:
ANTS: You make me nervous, Jules.
ME: Why?
ANTS: I’ve fallen in love with you again.
ME: Hell, Ants, we’ve already done that!
This afternoon Anthony was, as is usual now, in his armchair in his room at the nursing home and a bit confused. I put the heater on, zipped up his jacket, put a rug from home on him and changed the TV station to “Neighbours”. Anthony’s hands were cold, so I took the heat bag my friend Jen made and microwaved it for 4 minutes in the kitchen (staff let me come and go from kitchen area now), took it back and put it on his lap, placed his hands on it and put the rug on top.
Anthony was really drowsy – has been all week – but at one point I was able to rouse him (by punching him gently in the shoulder). His eyes were blank until they met mine and I said, “Ants, I love you more than anyone in the world.” Suddenly my eyes filled up with tears.
There wasn’t much response so I tried again, more shoutingly, “Anthony, I just told you that I love you more than anyone in the world, and my eyes filled with tears, and you ignored me!”
Anthony looked into my wet eyes, and his drooping mouth (caused by Parkinson’s disease) curved upwards into a smile. I realize that doesn’t sound like much but to get a smile from this previously jovial person who is now so disabled, is a small miracle. The only thing that annoys me about this smiling scenario is that I have to work very hard to get a smile out of Anthony whereas Ming just has to walk into his room and shake his hand and – BINGO – Anthony smiles – grr!
I’m so grateful for the decades of smiling we did before smiling became an effort for Anthony – not because of sadness but because of how PD affects the muscles of the face. So nowadays I come into his room with a huge smile every single day.
I think Anthony has entered a new phase of Parkinson’s Disease just in the last week or so. Taking him for drives, or home for the morning or afternoon, or out to lunch, or to visit friends/family has all-of-a-sudden, it seems, become something we don’t do any more.
This new phase is partly due to a deterioration in Anthony’s physical mobility, and his current sleepiness. The transition from Anthony and Julie gallivanting off for the day to Anthony and Julie sitting in his room at the nursing home, watching re-runs of Master Chef, has been strangely enjoyable for me.
Today I had to take Ming to town to get the bus to Perth at 8.45am so I thought I may as well go straight to the nursing home and spend the day there. After seeing Ming off, I found myself in an I-can’t-wait-to-see-Anthony-mood (a mood that is capturing me more and more).
So, for the first time ever, I spent the entire day at the nursing home (from 9am – 4pm). Partly, I did this as an experiment to see if I could cope. But my other reason was to see if Anthony would like me being with him in the nursing home rather than going out; he did! I will now plan all of my writing etc. to be done in the nursing home.
I’m not blogging as consistently as before – hope to catch up soon with blog friends.
I’ve had a wonderful rest from blogging (as in NOT reading, writing, commenting, replying) and, despite the inevitable guilt, it has been great to concentrate on other things.
Like my navel!
That’s Gutsy9 by the way.
Life here has become too busy to sustain blogging every day so I’ve decided to post once a week instead of once a day. Again, I really appreciate the support and friendships formed with other bloggers but I simply can’t keep up.
I think, too, I have oversubscribed to blogs in general and, especially to those that deal with grief. The kinship and support exchanged with those bloggers continues to sustain me but also makes me sad. I can hardly cope with my own sorrow about Anthony, so reading about the grief of others is very hard – too hard for me at the moment. For those of you who I have become close to, we have each others’ emails so we can still keep in touch. Please feel free to email me on juligoyder@gmail.com
Years ago, when Anthony was younger and still milking his cows, he would have a mini-rest after lunch and that would sustain him for the afternoon ‘shift’. He would have a solid sleep for around ten minutes then get up again, full of energy!
The memories, all mish-mashed now into the present, are sometimes heartbreaking for me, but not for him, thank God. He is okay; my husband is okay; he is being well looked after in the nursing home; he is warm; when he is confused, the nurses reassure him. And tomorrow, I will go in and stay with him for the afternoon and ask him if it is okay if I lie on his bed while we watch TV ….
Resting.
In the southwest of Western Australia we are experiencing a heat wave and, at 7.30pm the thermometer in the kitchen is nudging 38 degrees C to over 40 and apparently tomorrow will be even hotter. Oh that’s great – the air conditioner in the car stopped working a week ago and I have to take Ming up to Perth tomorrow for his surgery on Tuesday. I am going to be so worried about the animals in this heat (yes I’m just a tad worried for Ming too). Ming suggested he drive himself up for the surgery (that’s how nonchalant about it he is) and I have to admit I was a bit tempted but no, of course not.
So we are booked in to a hotel within walking distance from the hospital so that we can have a ‘night before’ get together with friends, a good sleep, then walk up to the hospital at 6am on Tuesday. Ming spent a couple of hours with Anthony at the nursing home today and we got Ants home yesterday for the afternoon so I am hoping he will remember what is happening and why I am not visiting. I will ring him of course but that is problematic in itself because he is often unable to remember how to answer the phone. But Ants hugged us both and wished Ming luck and said he would understand if I didn’t see him for a few days.
Oh, that’s right – this is about what to do if your computer overheats.
Put a frozen package of something or other under it and it will gasp with relief!
Such a relief! Today, Ming and I had planned to go into town, get presents for each other and Anthony, get a Christmas tree, a ham, wrapping paper, sticky tape (which I can never find), send a few last-minute cards, decorate the house, find the Christmas tree lights and ornaments (oh where did I put them?) and generally have a frantic, stressful, expensive, horrible day.
But on waking up this morning to a day that was already promising relentless heat, I changed my mind and a bit later I discussed my idea with Ming:
Me: I think we should postpone Christmas.
Ming: What?
Me: Well, you will be in hospital until Christmas Eve … actually maybe we should just skip Christmas this year.
Ming: What? No presents?
Me: No presents.
Ming: No tree?
Me: No tree.
Ming: No turkey?
Me: No turkey.
Ming: No Christmas crackers?
Me: No Christmas crackers.
Ming: Mum, this is such a relief!
Me: So you agree?
Ming: I think it’s a brilliant idea!
Me: Without all the usual fuss we can celebrate Christmas for what it is.
Ming: Do you mean go to church?
Me: Yes.
Ming: Okay, let’s shake on this.
So we shook hands and grinned at each other.
The sense of relief is huge! I don’t have to fight through the throngs at the shops, spend a small fortune on ‘stuff’, don’t have to worry about how the hell I am going to cook a turkey with no oven, don’t have to search the whole of Australia for cranberry sauce, don’t have to spend hours wrapping presents, don’t have to queue up at the post office – ahhhhh!
A bit later:
Ming: But what will we eat for lunch on Christmas day?
Me: Ham sandwiches? I mean Anthony hardly has any appetite anymore anyway, it’ll be too hot for me to eat and you’re a fussy brat.
Ming: I like ham sandwiches.
Me: Good, then that’s decided.
Ming: But Grandma’s still coming on Christmas day isn’t she?
Me: No.
Ming: WHAT?!
Me: I’m joking, you idiot!
Ahhhhhhhhhhhhhhh – now all I have to do today is frolic with the peacocks – yeeha!
A couple of weeks ago I put the kettle on and it boiled and I made my morning coffee A bit later, I put the kettle on again for my second cup and nothing happened. Anthony’s 1963 stove died quietly.
Sigh … it is only three years older than I am, poor old thing!
Yesterday Ming and I went up to Perth for the pre-op. things – blood and urine, ECG, consent forms for bone graft and bone marrow, consultations with a nurse, a doctor and an anaesthetist and, in the midst of all of these exciting events, I opened the letter we’d been given on arrival.
Well I got a bit of a shock because his surgery is scheduled for next Tuesday, 17th December! This means he will come out of hospital on Christmas Eve, or may be in over Christmas. Ming is elated it is happening before the new year but, with such short notice, I am a bit panicked about organizing things. He has to be in the hospital at 6.30am which means we will have to go up to Perth the night before and stay in a hotel. I will probably book in for two nights so I can see him the next day but then he wants me to come home again (“so you have time to get my Christmas presents, Mum!”)
This revision surgery is nothing compared to the massive scoliosis op. last year so it should be a piece of cake (I hope!) I took his photo this afternoon after asking him how he felt about the op. His expression is difficult to read but to me it says, “Fine!”
While we’re in Perth, these two guys will look after the farm!
jmgoyder 