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.
A caregiver’s perspective
The term ‘caregiver’ is relatively new to me and I am not quite comfortable with it because it has always seemed so weird when various professionals (doctors, nurses, nursing home staff, receptionists) have asked me if I am the caregiver/carer. Whenever this question was asked in front of Anthony, over the many years of his various illnesses, I always used to say, “No, I am his wife.” The caregiver/carer identity always seemed somehow insulting to him so I found it hard to accept.
I had to accept this new facet of my identity of course because eventually I had to apply for a ‘Carer’s allowance’ so I could get paid a little bit of money to make up for all the leave I was taking from my job at the university. This was because it became more and more apparent that I could not leave Anthony alone as he was prone to falling over, nobody could get the Parkinson’s medications quite right (a common dilemma), and sometimes Silver Chain staff couldn’t come when I needed to go to work. After two years of this tenuous situation it all culminated in my resignation, Anthony’s admission to a nursing home and Ming’s first scoliosis surgery.
This was around the time I began this blog and, even though I know I can go back and look at what I posted during these difficult times, I don’t want to until my own memory of putting my beautiful husband in a nursing home kicks in. Of course I remember the trauma of this happening and Ming’s impending surgery but I don’t remember a lot of what happened between then and now.
Now, I only know the joys and anxieties of each single day; today I brought Ants home for awhile, then took him to lunch at my mother’s, then took him back to the nursing home where ‘goodbye’ was fine because he knows he will see me tomorrow. Ming can’t understand why I go in almost every day now when I didn’t used to and he even gets a bit jealous, so I have to be quite careful to divide my enormous love for both of them evenly – ha!
I used to see people wheel-chairing their loved ones around supermarkets or down the street and I would think, oh how can they bear it? Maybe, when people see me (still relatively young), wheeling Ants into a cafe or shop, they think the same. I don’t know. But for the moment I actually find these outings great fun even though it probably looks like an OMG-how-ghastly-for-her situation.
Today, on the way back to the nursing home, I stopped at the grocery shop and left Ants in the car (too hard to get him out and back in again) and as I approached the car with the groceries, I saw him smile a little bit.
Once I got back into the car, I knew it would only be a few minutes before I would have to leave him at the nursing home and say goodbye and I was feeling a bit crappy until Anthony said, “You really are very beautiful, Jules.”
The caregiver/carer role can sometimes be reversed in such a way that is SMACKS you in the face and makes you glad, makes you think, makes you wonder. Thanks Ants – you made my day!
Prayer
I am not really sure what prayer is any more, but, whatever it is, I have rediscovered it.
Earlier today I reblogged a post written for Robyn by her friend, Resa, but like many a reblog, it didn’t get read by that many people on my own blog, so I thought I would add something here to encourage people to check it out AND to check out Robyn’s own blog at:
I have known Robyn since I began blogging and was compelled by her courage in dealing with debilitating physical pain, her talent for photography and poetry, and her immediate and generous friendship to me. But a few months ago she stopped blogging and I knew things must be badly wrong, so I sent her a couple of tentative emails, worried that I might be intruding, but she replied and told me things were not so good.
Since then, I have worried and wondered and prayed and been scared for her so, it wasn’t until Resa posted about Robyn that I knew about her impending major hip surgery this week. I cannot imagine the kind of physical pain Robyn has endured over the years, but I can imagine the hope felt by Robyn, and her family and friends, that this surgery will vastly improve her condition, and that it will take away the pain.
Many people who follow this blog already know Robyn, but if you don’t, please spare a thought and a prayer for her this week. She is one of the best people I have ever been blessed to meet.
I salute you Robyn, over and over again.
This is a prayer.
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!
Twenty years ago….
Twenty years, nine hours and forty seven minutes ago I gave birth to a funny, round-headed, thin-limbed creature called Ming. Happy birthday, beautiful boy-man! Anthony and I love you very much.
How to apologize?
The reason I have added a question mark to the title of this post is because I don’t know the answer in general. I only know my own way of apologizing, which is pretty much to roll in the dirt, say I am sorry over and over, and kiss the toes of people I don’t particularly like or understand anymore, hoping for some sort of forgiveness or reconciliation.
But there is something fundamentally skewed about this kind of apology because it implies guilt (mine – i.e. it is all my fault) and it also gives the person apologized to a very good reason to keep hold of his/her grudge, whatever it is. Sometimes that grudge has nothing to do with the present but has everything to do with the past and, when the past has somehow become toxic, you know you have a problem.
Ming and I were talking about all of this philosophical stuff today, after a fantastic lunch out with Ants and Meg, and we came to the conclusion that there were three ways to apologize and forgive: (1) Blip it, move on, act normal and civil, forget the hurtful things said/felt; or (2) Talk it through, be honest even if it means tears and/or recriminations, and tell me what the hell I have done that has hurt you so much; or (3) Distance.
Give me distance any day!
Sometimes Anthony imagines or hallucinates about past family conflicts and I have to reassure him that everything is okay now. I hate that he remembers incidents that are best forgotten and I hate that he forgets all is well now.
I always want to talk through these kinds of relationship conflicts – always! I want to put it all on the table, so to speak, but I am usually on my own because nobody wants to get into the nitty gritty of what the hell is wrong here, and nobody seems to want to apologize back!
Why?
I am so sick of saying I am sorry!
My uninhibited son!
Two and a half weeks ago, on the day of Ming’s second scoliosis operation, my oldest friend, Tony, came to visit us in the hospital. Ming was in one of those gowns they put you in before surgery and he was waiting in a very small room with several other gowned people. He had been told to remove his underwear but, as the gowns are so see-through, he hadn’t done so yet and his bright orange jocks were quite visible.
Well, just before Tony arrived, Ming, thinking he might be called at any moment, went to the bathroom and removed the jocks and handed them to me all scrunched up to put in my handbag. “It feels really weird, Mum!” he said to me/to the whole room (even when he speaks quietly his voice booms!) He had been given a premed. of some sort which had disinhibited his already uninhibited personality.
A few minutes later, Tony texted me to say he was in the hospital cafe so I went downstairs and brought him back to the little waiting room to see Ming. As soon as he saw Tony, he stood up and shook hands, then said, “My genitalia are exposed.”
Tony’s jaw dropped slightly but he is used to Ming’s idiosyncratic statements so he just said something like, “Thank you for that information,” and I cracked up laughing when I saw the other people in the room smiling at this odd exchange.
Yesterday, Ming and I had lunch with Tony in the town where we always meet, halfway between where we live and Perth, where Tony lives. It was wonderful – Tony can make me laugh like nobody else, and I love watching the way he and Ming banter. It actually struck me, at one point, that Tony is like a second father to Ming, especially when Ming jokingly said “Thanks, Dad” when Tony paid for our lunch!
Thanks, Tony – your friendship is a gift.
This is us yesterday.
If something is beyond your control, stop trying!
We have five peahens (female version of peacocks) who have been missing for about a week. As it is mating + nesting season here in Western Australia, it is quite likely that they are either hiding together and sitting on their eggs. But it is also likely that they have all been killed by foxes, and their eggs eaten.
All of the males are still around and call out constantly (imagine a wildcat’s yowl multiplied by several hundred decibels), but the only peahens still here are the two white Princesses and Gutsy9.
I have looked in the hayshed, listened for chicky sounds in the paddocks, and driven around the block in this little country town, searching for them – all to no avail – so now I don’t have any choice other than to give up and let nature take its course. I miss seeing those five girls fly into the trees at dusk and I hope they are okay and that we will see a few chicks but I am beginning to wonder now.
This didn’t happen last year because all but the two adults (King and Queenie) were still too young to do the mating thing properly – and I am still not quite sure how G9 survived before I found her!
I hope the peahens come back but maybe they are gone. There is no point trying to control what is, what was, and, sometimes, what will be, so I have stopped trying.
What will be will be.
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.
jmgoyder 