jmgoyder

wings and things

A letter of thanks

I have decided to write a letter of thanks to the wonderful staff at Wattle Hill Lodge so that they know how much they are appreciated. This is a first draft!

A letter of thanks to all staff looking after Anthony

Thank you for being so kind and considerate, way beyond the call of duty.

Thank you for being so gentle with Anthony, for liking him, for talking to him and listening to him.

Thank you for tolerating my uncertainty and ignorance of various rules, like signing in and out, coming in when there was a gastric outbreak, forgetting to fill out the satisfaction survey.

Thank you for your friendly smiles and greetings when you are rushed off your feet.

Thank you for putting up with my phonecalls to you when I can’t get through on Anthony’s phone.

Thank you for not minding our son Ming’s loud cheekiness.

Thank you for telling me that some of Anthony’s clothes were a bit shabby, to bring him socks that had treads on them, to bring him long pants (which he has always hated, but is now okay with).

Thank you for not minding when I accidentally interrupted your lunch breaks, or handover, or couldn’t remember the code to get out of the door.

Thank you for accepting that I can’t sew so all of Anthony’s clothes are labelled with a texta.

Thank you for not telling me to get lost when I wanted to help you help him with the toilet.

Thank you for so quickly realising I was not his daughter.

Thank you for telling me how disappointed Anthony was when I altered arrangements to bring him home.

Thank you for adjusting his phone, ringing me on his phone, recharging his phone when it was flat.

Thank you for making him feel safe, secure and fine at night now.

Thank you for tolerating the various doctors’ alterations of medications.

Thank you for the fact that Anthony thinks/knows you are all wonderful.

Thank you for being so kind to me too.

Thank you for not noticing that underneath my smile, my heart is ripped apart and the floor of my life is covered in the blood of loss.

Thank you for telling me I shouldn’t be lifting Anthony on my own.

Thank you for telling me that you had also noticed he was becoming more confused.

Thank you for talking to me, chatting to me, making me feel normal – making us feel normal – in a comfortable, cup-of -tea way.

There are so many more thankyous to you guys. I used to be an enrolled nurse and I mostly worked in nursing homes or with multi-handicapped people, so I know what you are all having to do to help Ants as he deteriorates, and I salute you.

So, thank you from my heart – all of you. I haven’t mentioned names here because I don’t know everybody’s names yet but I will work on that.

51 Comments »

A wonderful realization

Well, it took a wordpress glitch to shake some sense into me. The notifications of blogs I’d subscribed to (even though I did that whole unsubscribe thing awhile back) weren’t coming through to my email account, so I got a bit worried and, yes, felt a little lonely not to get those emails.

Various comments suggested that other bloggers were experiencing glitches like this and several said they simply use the Reader to check up on their blogfriends. To cut a long story short, I went in and unsubscribed from every single blog in order to resubscribe when my particular glitch was solved.

But halfway through the unsubscribing process, I realized that blogging has become my way of avoiding things, avoiding some of my responsibilities, avoiding Anthony and the pain of what he is going through in this final phase of Parkinson’s disease.

So, from now on, and I’m sure none of you will be hurt by this because I have totally unsubscribed from everyone – I am simply going to write a daily blog, respond to comments and that’s it. I have to do this for awhile so that I can focus on Anthony and Ming, so for those bloggers who I am close to, with whom I have exchanged support, humour etc., please forgive me. I will catch up with your blogs as soon as I can and I am available by email anyway.

I have decided to stop using blogging as an avoidance strategy.

Hopefully this makes sense!

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Funny incidents

FUNNY INCIDENT 1

Anthony and I just had a nostalgic talk on the phone about the Captain Stirling hotel (where he thought he was last night). He remembers vividly his delusional episode which I find rather remarkable. I remind him of our stay there when I was heavily pregnant.

Me: You took me to the cheapest hotel in Perth, with a room that didn’t even have a bathroom so I had get up and go to a communal bathroom a million times during the night because of being pregnant and needing to use the loo. Your were such a tightarse!

Anthony: I thought it was quite romantic.

Me: You really ARE deluded!

Anthony: Remember bumping into Ed in the bar? [distant relation around Anthony’s age]

Me: How could I forget that! Remember how we didn’t understand why the bar was so crowded with middle-aged women?

Anthony: And Ed told us is was ‘Grab a granny night’!

Me: It was appalling! So why did you think you were there last night?

Anthony: Because it looked exactly like the Captain Stirling.

Me: So you’re okay today?

Anthony: Yes, I’m not there today.

Me: Where – at the Captain Stirling?

Anthony: Yes, I’m back here.

Me: Okay, I’ll be in later – I love you.

Anthony: [mumbles incoherently – this is happening a lot now]

Me: I can’t hear you – what did you say?

Anthony: I love you.

Me: Well it’s about time you said that!

Anthony: I couldn’t remember the words.

You gotta laugh!

FUNNY INCIDENT 2:

Ming and I have the usual mother and son conflicts and after a particularly horrible argument, which Ming later insisted on analysing every nuance of until we were reconciled (rather exhausting), we had this conversation-

Ming: Mum, I don’t want to see any of my friends for awhile.

Me: Why? What’s wrong?

Ming: Nothing. It’s just that I want to work on repairing our relationship.

Me: You really are unique, kid!

Ming: I try.

We both laugh!

FUNNY INCIDENT 3

Adolescent peacock 1 [we have too many for me to name them!]: Is Julie watching?

Adolescent peacock 2: She’s trying to take pictures you idiot! Turn around.

White adolescent peacock: I think I’ll leave you guys to it.

Angelina: Those two peacocks are getting very cocky aren’t they, Malay.

Malay: Hey, watch your language!

Tina Turner: Don’t worry, New Kid, around here this is considered normal behaviour.

New Kid: How do they do that feather thing?

Tina Turner: I don’t know and I don’t care!

Phoenix 1: Their need to flaunt themselves deeply saddens me. It’s a sign of the times. I prefer to let my beauty speak for itself.

Adolescent peacock 2: I told you to turn around. Do you think Julie wants a picture of your bum?

Adolescent peacock 1: I can’t turn around because you’re in the way. I’ll try again tomorrow – I’m exhausted.

New Kid: I’m having a bit of trouble adjusting to this place, Malay.

Malay: Don’t worry, New Kid, I was born here and I’ll look after you.

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How to unfold a day

Anthony was home for most of today and, for a couple of hours, he was okay and mobile and trying to do some jobs, and he and Son got the Aga lit. Eventually! Teenagers (Son) and geriatrics (Husband/Anthony) don’t always agree on these things. And, it struck me, as I withdrew from their Aga-lighting tiff, how amazing that my two ‘boys’ – this father and son who look exactly like each other but who have an age difference of nearly 60 years – can communicate at all.

After a lunch of doner kebabs, which Anthony used to love but couldn’t manage because his hands don’t work so well any more, everything went a bit downhill and Son withdrew as Anthony became more and more crippled up. His morning drugs for Parkinson’s seem to work well, but by early afternoon it became a predictable downhill slide and by 4.30pm he was more than ready to go back to the nursing lodge.

None of the things I had planned eventuated. I wanted to show Anthony the latest blogposts, which he usually loves, but he said he was too busy for that even though he was just sitting in the armchair near me, drinking a cup of tea. He wanted to sweep some of the bird crap away from the back door, even though Son and I had already done this, so I walked him outside very slowly with his walking stick, saying ‘1,2,3’ which usually gets his legs working. Eventually I put the straw broom in his hands and told him that if he fell over I would kill him, and left him out there to try. And while I watched through the window, he did a little bit of a sweep and then froze, head down, unable to move; this is Parkinson’s.

On the way back to the nursing lodge, Anthony was a bit incoherent and seemed to be having another ‘turn’ but then he suddenly said, “Jules, when you bring me home tomorrow, can’t I stay the night?” and I had to, once again, say it was too hard, he was too heavy etc. He accepted this and my guts twirled with how horribly humiliating for this man who used to be such a macho machine to have to ask me if he could sleep in his own home.

So, tonight, having rung Anthony to say goodnight, and having fed Son who is now milking cows again for the beautiful neighbours, I am unpleating the day and wondering if I could have done it better, wondering if I should be crying, wondering and wondering and wondering….

51 Comments »

Anthony is coming home for the day.

My husband, Anthony, is coming home for the day. I will pick him up from the nursing lodge in about two hours and bring him back to the farm. He is determined to help us do some jobs around the place, to relight the Aga and to get a fire going in the fireplace. These jobs will take until lunchtime and I am going to make one of his simple favourites – scrambled egg with chopped tomato. After lunch I predict he will have one of those weird ‘turns’ he has at noon but this time I will not panic or get the ambulance – I will just wait it out and let him sleep for awhile, even though it isn’t really sleeping; it’s more of a going almost unconscious thing which one doctor describes as a ‘brain freeze’ typical of Anthony’s type of Parkinson’s Disease.

Then we will probably all watch something funny on television (Anthony’s favourite series is Black Books), have afternoon tea while I show him the blog, then I will take him back before 5.30pm when dinner is served at the nursing lodge. By this time (I know from experience) Anthony will be very crippled and it will take both Son and me to get him to the car and Son’s patience will have run out. He is a wonderful teenager but, having shared the care of Anthony over the years previous to admission to the nursing lodge, Son has had enough and I completely understand this, so I will not make him accompany us on the drive back.

On return to the nursing lodge I may have to fetch a wheelchair. We will be greeted by the beautiful, friendly staff and I will settle Anthony back into his room, stay for awhile and try to jolly him out of his sadness at not being able to stay the night at home. Then I will leave and try very hard not to cry on the way home again. Once back at the farm I will feed the birds and put them away for the night, then I will go into the house where Son will give me a bearhug.

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An apple crumbly day

Son and I went in for lunch with Husband at the nursing lodge today and it was lovely. Well, the food was lovely, Husband was feeling okay, Son arrived a little late from his last night’s party, and I was quite boppy but then, as Husband ate his dessert, my dessert and Son’s dessert, hardly looking at us, I felt my boppyness subside into a more low-key tone.

“Are you starving?” I asked Husband, laughing at his appetite.

“Well, you never make me sweets,” he said, polishing off the third apple crumble and custard.

Son and I got the giggles briefly and Husband glared at both of us, between mouthfuls, then winked and said, “Glad I provide you guys with so much amusement.” His mastership of irony has always caught me off guard and, as I didn’t have an appropriate response, I just said, “You are such a glutton!” and he replied, “And you are such a glutton for punishment,” and reached out and squeezed my knee.

Not long after this, when the three of us were back in Husband’s room, he started to have one of his ‘turns’, getting very drowsy and weird. We alerted the nurse, then eventually we left Husband almost asleep in his chair and came home. Needless to say, all my boppyness had dissipated. We had only been there for two hours but it had felt like ten hours – oh, the guilt of admitting this!

But worse was to come when Son said, “Mum, I don’t want to do this anymore.”

It seems so strange that only a few days ago, I was worried about Husband’s apparent heartbreak at not coming home to the farm overnight anymore; then, when we encountered such difficulties bringing him home just for the day (and his lack of mobility shocked me), I realized that all three of us have to somehow accept that the nursing lodge is home for him now.

So already, the routine we decided to stick to (several posts ago) has become impossible because getting Husband home has now become a big ordeal due to his deterioration with Parkinson’s, which I think is in its final assault mode. I hate this disease more than I have ever hated anything because it is so slow and cruel and humiliating and scary. Many of Husband’s best friends are nervous to visit him and I don’t blame them at all.

I think the most heart-breaking thing today though was when Son reiterated to me on the way home, “I don’t want to see Dad like this any more, Mum.”

And this puts me in a dilemma. Do I force Son to come with me to visit Husband or not? My opinion is not – and to let Son choose when and if. He has been through this huge scoliosis surgery which more or less coincided with Husband going to the nursing lodge and, now that Son is nearly out of his spinal brace, I think Husband and I need to let him go, let him do what he thinks is best.

Below is a photo of a photo of Husband and Son, when Son was just born. I love this photo!

Oh yeah, and I’ve never particularly liked apple crumble anyway.

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Standing up straight

The following is a copy/paste of an email I just send to myself and to Son in response to a phonecall from a beautiful relative who suggested we need a bit more routine with Husband in order to overcome the horrible rut the 3 of us seem to be in.

Son and I discussed things and he handwrote our new routine+rules and we shook hands in agreement because I have finally come to the point where bringing Husband home overnight is impossible due to the latest phase of his Parkinson’s.

Even though, as one of my friends pointed out to me on the phone last night, I am rather frighteningly, transparently, honestly ‘out there’ on the blog, there is a lot of in-between-the-lines/behind-the-scenes stuff I have not divulged, including those lost hours of staring-into-space inability to even wash the dishes…

So I am elated about this new plan and I am determined to make it work for Son’s sake.

New routine:

Monday – no visit

Tues – Dad home all day while Son at Music school

Wed – no visit

Thurs – Mum visit Dad for lunch at nursing lodge

Fri – no visit

Sat – Dad home for day

Sunday – optional visit Dad

New rules:

Dad can’t stay overnight here ever again

Mum to ring Dad at 11am and 7.30pm every day (instead of every couple of hours).

I think this is a great idea and I am not going to get sad about it because it beats the hell out of my random routine so far and it gives us all some predictability in the face of such unpredictability.

Son’s face lit up with relief when I agreed with him and he said, giving me a hug, “Mum, please let us be a team from now on – please!”

“Okay,” I said.

Poignancy is now in purgatory and pragmatism is my new friend because it always stands up straight.

So tonight, I rang Husband to tell him about the new routine but he just said, “I’m watching the news, Jules, can you ring a bit later?”

64 Comments »

Dead or alive?

This picture was taken at Husband’s 75th birthday party 14 months ago. A lot has changed since then, to say the least….

……………………………………………………….

I hesitate to write this post because I realize it might provoke the ire of some, but, when Husband said yesterday that it would be better for everyone if he died, I caught myself thinking yes and no in the same moment.

Obviously, my no response was the one I went with in order to comfort Husband and, when I saw him later in the day (he had been ambulanced back from the local hospital to the nursing lodge, but I didn’t know this at the time), I reiterated this no.

On the other hand, now that Husband, Son and I have managed to crack the shell of the boiled egg of death, that yes is a tempting thought if only to relieve Husband’s suffering in relation to his recent downhill ‘slide’ into this new phase of Parkinson’s disease.

Euthanasia is a terrifying topic; it is also utterly out of the question for us, but Husband is no longer in the throes of life but in the throes of death. This latter point is not an emotional statement; it is a statement of fact.

The other evening, as I was tucking Husband into bed here at home, I said, “Sometimes, when I can’t wake you up, I think you’re dead.” In reply, he said, drowsily, “That would be a good outcome,” and he actually chuckled. You see, I told you he is a hero!

I am not sure what Husband, Son and I are supposed to wish for anymore….

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