It was so funny watching the interaction between Anthony and my ever-curious little peahen, Gutsy9. But Anthony was much more interested in his glorious flame tree….
And my mother’s pavlova!
A tip for taking people with Parkinson’s disease out and about
As Anthony’s Parkinson’s disease (diagnosed several years ago now) has worsened, it has become increasingly difficult to take him out, or bring him home from the nursing home. For a few months last year, I relied on the wheelchair taxi because he had become so heavy to manouevre. Then, with some tweaking of his medications (by his specialists and doctors) and with a renewed sense of determination on my part, and special attention to timing, I began again to take him out by myself.
The timing of Parkinson’s disease medications is vital. If Anthony doesn’t get his 11am pill, he is paralysed by noon. The staff at the nursing home have been brilliant at getting this right. This means that if I pick him up for lunch he is able to walk (using a walker) to the car, get in with just a bit of a shove from me, get out again with a 1, 2, 3 pull up from me, walk into a cafe or whatever, eat some cake, and walk (using the walker again) back to the car.
His next scheduled pill for the day is 4pm but I really think it should be 3pm because that is the time that he always begins to falter, with his words, movements etc. so, if he is home, I give it to him early because we have had some extremely difficult situations where I just cannot get him to move his feet at all, let alone walk. I guess we are getting to the stage now where I have to bring both the walker and a wheelchair with us if we go out.
The person who most inspired me to take Anthony out more is Terry at http://terry1954.wordpress.com/
Terry has been looking after her brother, Al for years and Al doesn’t just have PD, he also has MSA (see Terry’s blog for what this is like). Al is now bedridden and on the brink of death with Terry constantly by his side. She has always inspired me in the way she copes with pragmatism and prayer in equal amounts.
But, before Al reached this stage, Terry used to to take him out and about, to his favourite shops and restaurants. I read about these escapades with mixture of delight and admiration, but what really struck me was how much joy this gave Terry herself. She is the person who gave me the impetus to take Anthony out and about more.
And, if I get the timing right, Ants and I can still have a rollicking time (well sort of!) However, here is where Terry and I are different; she took Al to places Al liked to go to (she is unselfish), whereas I now take Anthony to places I like to go (I am selfish).
However, that is my tip: instead of seeing it as a chore to take someone with PD or any other disease out of the nursing home for a bit of a break, think of where YOU would like to go. That way, the outing is transformed from a job into a joy.
Just don’t go to the beach (wheelchairs don’t do well on sand!)
This post is dedicated to Terry and Al.
Out to lunch!
Today is the fifth day I have been out to lunch with various family and friends AND had visitors in the evening. I feel thoroughly resocialized!
Yesterday was lunch at the local tavern with Ming’s best mates’ families. The day before was lunch at a restaurant with Ming, Meg and Anthony, where Anthony proved that his appetite is still quite healthy by vacuuming up two dozen oysters naturale AND a chocolate dessert (even though he had already had his usual roast dinner at the nursing home!)
And then there was lunch with with an old friend whose husband is in hospital, lunch with Tony (which I already blogged about), lunch today with Anthony’s niece who is also my niece but she is older than I am but looks younger (grrr!), then drinks here with another old friend, her husband and gorgeous daughter, then last night a rollicking time with my first niece, Ash, and her Scottish husband, who have both moved back to Australia.
Happiness can be a bit exhausting. Oh yes, and the peahens are gradually returning!
Powerful!
I follow the blog of a wonderful woman, Nicole Cody, who writes with such positive, energetic wisdom that sometimes it takes my breath away. In her post today, she invites us to choose a “Power Word” for 2014 – see http://cauldronsandcupcakes.com/
Lots of possible words came to mind: gratitude, laughter, healing, energy, harmony … but then I suddenly realized that I wanted my own power word to be the word, power itself. Or, to be more exact, the word, powerful!
POWERFUL – yes, I like it!
For me, this word doesn’t mean that I want to stomp, Godzilla-like, on anybody or anything; instead, it signifies a transition from the flailing, exhausted, try-too-hard strength I already have to a more spiritual, muscle-bound ability to contend with all 2014’s challenges, and embrace all of 2014’s joys with the kind of gratitude that is loud and fierce and inviolable.
The weird thing is that as soon as I chose my power word, my limp became a leap, and my wrinkled heart grinned itself into a balloon.
Thank you, Nicole! This photo of Prince is for you.
My friend, Nicola
“Nicola” is a sort of pseudonym for one of my very best friends. The other night, Ming and I were invited to go to her place for drinks but the day got complicated with Anthony home again; unexpected visitors; food shopping; a dreadful hour back at the nursing home in the late afternoon when Ants was almost too paralyzed to get from car to his room despite my help; hurting my stupid back lifting him; Ming getting his bandages wet and me having to peel them off to see a much longer scar/wound than I’d expected, not being able to find the betadine, a rather nasty altercation with the beautiful brat, planning the exciting visit to see my youngest brother, wife and kids the next day and liaising with my mother about this; answering calls on my stupid, non-working, cutting-out phone; getting a headache; and forgetting to put beer in the fridge – argh!
But Nicola was expecting me so, by the time I’d done the bird feeding/watering/yarding, I was kind of ready to go but then Ming and I had another altercation and I ended up yelling at him because the same drugs that were making him all lovey-dovey are now making him monsterish – another argh!
So I rang Nicola and said we couldn’t come (I only told her a bit of the above which is already an abbreviated version of the hell of the day) and she said that it was okay.
I now think that the sentence, “It’s okay” is the best sentence ever invented because it says everything. When someone lets you off the hook of a commitment that you have broken by saying “It’s okay” your whole heart stops holding itself tight and starts beating out a beautiful soft song of gentle understanding and relief.
My reputation for letting people down at the last minute is something that I am not proud of but it stems from the days/years when I was looking after Anthony at home. I became reliably unreliable!
Thanks, Nicola, for your understanding and empathy and amazing friendship. You are a rock!
IT’S OKAY!
Neighbours from heaven!
Anthony was in his 60s when he retired from dairy farming, due to a combination of factors including ill health. Now Ming, at 19, has been forced to retire from his job as dairy hand for our neighbours due to his back. Once he is over this second surgery you never know, he may be able to return but in the meantime he has been replaced.
Ming’s boss’s mother came over just before Christmas with a whole bag of different chocolate treats for him; she is such a gem! Below are two photos she took of Ming milking a little while ago. I was so proud of him walking in his dad’s boots and she is so glad they now have someone who can hang up the hose properly better than Ming – ha!
Despite the sadness that Ming has had to give up a job that he’d only just begun to do full-time, the fantastic thing is that we have gotten to know these amazing neighbours over the last three years and they have given us their friendship and support throughout our various ordeals. Ming said to me the other day that his boss’s mother is like his own ‘second’ mother!
I wish this extended family all the very best for 2014 and we feel indebted to them in so many ways. They are dairy farmers from way back which makes them heroes in an era when this kind of farming has become unpopular (due to the necessary 24/7 commitment).
Christmas day with my husband, son and mother.
Ants, Ming, Meg and me.
Thanks, Ma, for providing the turkey and the massive pavlova, and enabling us all to have a very cruisy day. Thanks, weather, for not being too hot. Thanks, God, for making today’s church service interesting and down-to-earth. Thanks, Anthony, for squeezing my hand on our way back to the nursing home and wiping my unexpected tears. Thanks, Ming, for being almost okay post-op. and for your humour. Thanks, extended family, for our wonderful night at Meg’s at Christmas Eve, my niece and husband’s homecoming, my brother’s homecoming (just last night!) Oh the list is getting too long so … to be continued ha!
Ming’s reaction to yesterday’s post
Ming: You don’t seem to love me as much as I love you!
Me: Yes, I do, it’s just that the pain medications make you all touchy-feely and you STILL want my hand all the time!
Ming: What’s wrong with that?
Me: Nothing really – it’s just that I kind of need my hand back because I have to use both my hands to do the various chores. We’re home now and in a week or so you’ll be much better.
Ming: You don’t love me like you used to.
Me: You’re probably right. I read somewhere that in order for teenagers to leave the nest a certain amount of angst has to happen between parent and child to allow this transition without heartbreak.
Ming: So you’ve gone off me!
Me: Yes – I used to love you at 100%; now it’s around 50%.
Ming: What?
Me: Kidding!
Sigh! And this is only part of the bizarre conversation we had today on the way into town to see Ants.
The photo is from two years ago, before everything went a bit haywire in our lives.
What to do if your computer overheats.
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!
Not buying into Christmas
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!
jmgoyder 