This morning the peafowl are doing something I haven’t seen before. They are playing some sort of chasing game around and around the house – almost like ‘tag’ in its old-fashioned sense. Mostly they are sprinting but, whenever one gets close to another, the one ‘tagged’ will fly up onto the roof, scramble across and jump down on the other side, and the chase begins again. To begin with I thought it was some sort of flirting game with the peacocks chasing the peahens but I have been watching, enthralled, for some time now and both males and females are chasing each other. They are doing this anti-clockwise around the house, over and over, and I cannot stop laughing.
My argument with Anthony in the nursing lodge yesterday has made me realize that I need to rethink a few things when it comes to explaining to him that coming home for good is out of the question. Of course this has been said before, but always a little evasively, with averted eyes and falsely hopeful half-phrases like, maybe tomorrow, let’s see if you’re up to it on the weekend, the restaurant on the beach possibly, not sure but I could get someone to help me lift you etc. Yesterday, I reminded Anthony that he had willingly signed into the nursing lodge as a permanent resident months ago, that it had become increasingly difficult to bring him home due to his deterioration with Parkinson’s Disease and this is how the conversation went. It was just after lunch, my mother had left and I closed the door to Anthony’s room so we could argue in relative privacy.
Anthony: So I’m here forever until I die am I?
Me: Don’t you remember? You were here for respite because we had to find somewhere for you to stay when Ming had his operation, then this room became available for you permanently and we had to make a decision or miss out and be put on a waiting list and we both decided, together, that this was a good idea.
Anthony: I just want to be home with you and Ming.
Me: I know, I know, but it’s impossible. You are high maintenance – you need nursing care. I did it for four years, Ants, and took leave from work for two years. I got exhausted from the night shifts with you and ended up in hospital myself – twice!
Anthony: But why can’t we just give it another try?
Me: Give what a try?
Anthony: Me coming home for the night.
Me: We’ve tried that – a few weeks after Ming’s surgery, I brought you home for the night and it was a disaster, and then we tried it again a few times and you were too heavy for me and then we decided to just do the day thing.
Anthony: But I can improve.
Me: How? You have Parkinson’s Disease and it’s getting worse. It’s not your fault and you can’t make yourself any better.
Anthony: So I’m going to die here.
Me: But I see you most days, talk to you several times a day on the phone, and bring you home once a week – why can’t that be enough?
Anthony: I just want to be home, Jules.
Me: Okay, listen to me. You want to be home. I want you to be home. We don’t always get what we want do we. I didn’t want a sick husband, I didn’t want to be alone – you think you are the only one alone? You are surrounded day and night by people who care for you – I’m the one alone.
Anthony: You have Ming.
Me: Ming is 18 – he’s out most of the time and good on him.
Anthony: Well make him stay home.
Me: No! I’m not going to trap him too!
Anthony: But you said you were lonely.
Me: I’m not lonely in general, you idiot – I’m lonely for you.
Anthony: That’s why I want to come home.
Me: Okay, this is what happens when I bring you home. You hardly speak on the way home; it takes me at least half an hour to get you from the car into the house and comfortable; you eat whatever I have prepared for lunch but leave most of it; it takes another half an hour to get you to the loo and out and back into an armchair; you fall asleep for a couple of hours; it takes half an hour to get you back into the car to go back to the lodge; it takes help from staff to get you out of the car and into the lodge and your room; and when I say goodbye you ask why I am always in a hurry and you make me feel guilty.
Anthony: Yes, but I love being at home anyway and I didn’t know I was going to be here forever.
Me: You did know! This is permanent Ants, you have to accept it – please. I am beginning to dread visiting you because you do this every single time and I can’t stand it. You can’t see beyond you, you, you, can you! What about me – why don’t you care about me? I am going to wreck my back, if you keep making me take you home.
Anthony: Jules, please don’t cry. I’m sorry.
Me: You are so selfish! I’m going to use your bathroom and then I am going home to a freezing cold house with no husband in it.
Anthony: Please, Jules, I’m sorry – I love you.
Me: I’ve got my sunglasses on now, in case I bump into any staff.
Anthony: Let me walk you out to the car. Just help me go to the loo first.
Me: I want to go home now – not in an hour.
Anthony: Okay, just give me a kiss, Jules – I’m so sorry.
Me: Here is your kiss. I have to go, Ants – sorry – I love you so much but you have to stop doing this to me, please …. I’ll ring you later. Oh, and another thing: sometimes when I ring you don’t know where the hell you are anyway.
And that was yesterday: give me today anytime because watching peafowl running in circles beats the hell out of yesterday.
jmgoyder 
i am not sure if i breathed while reading your blog.the arguing and him not listening sounds so much like home. i understand he is worse than Al, but in my eyes, the emotions and things that Al and Ants can not do any longer feel the same to me. Al can’t understand why I can’t lug the scooter everywhere. I am getting old! it hurts to load it unload it put it together, put Al in it, remind him a million times to sit up straight, watch the tears flow, see the snot drip, it just all drives me to wanting to stay home, and when i talk he refuses my words, thinking only of himself
It’s almost like the scooter has made things more difficult for you – argh! Thanks for knowing what I am talking about. What the hell are you gonna do Terry?
sometimes the weak part of me just wants to throw my arms up in the air and say f___ it all, and get in my car and drive til i am somewhere where no one knows me, then the sensible part of me comes back, and says stick it out as long as u can. if Al had dementia to the point he didn’t know me, it would make decisions so much easier, know what i mean?????? i sound like a mean old hag……..
Terry, you are anything but a mean old hag (sorry but that made me laugh) – to me you seem superhuman in what you do! And yes, dementia would certainly make our situations easier which seems a terrible thing to say but it’s hard enough dealing with the physical stuff – the emotional stuff is murderous. Love to you!
Argh!
btw – I am getting everyone else’s comments all of a sudden – so another wp glitch – may have accidentally deleted your posts for today so am about to check it out – another argh!
sorry to hear. hope it all gets itself worked out! hope you had a nice weekend, for the most part
It’s all good with a big dose of crap – you know what it’s like!
You were very strong to speak the truth to the man you adore Jules. And it being the truth doesn’t help how you feel about saying it, but you had to do it. And he had to hear it while he still could. Enjoy the days that you can, and just keep on keeping on, one more at a time. I am so sorry for all this mess, but I am glad your birds are keeping your laughter at the ready for you. You are going to need it more and more. Good Old Birds~
xo
R
I am not going in to town today except to pick up Ming from music school and rush home because he is milking. So I will not see Ants. In meantime I am getting a little speech ready for tomorrow – wish me luck!
You have all of that and more!
xo
R
This was heartbreaking to read and I am glad that it is not something I have to deal with well not yet anyway who knows what the future holds………I wish you luck with your speech…………
I am going to blog the speech for feedback. I am going to try to write it in a way that it could be useful for other people in the same situation – not sure.
What a frustrating conversation to have over and over again. Do you think he just forgets you’ve had that conversation before? I was thinking maybe you could go with the flow next time he brings up the subject of coming home, to make it easier for you, and just say you’ll take him home soon. Or do you think he’d remember and ask why it’s not happening? It seems he doesn’t remember either way.
I’m glad you brought up the subject of you. I think ailing people are so wrapped up into their own circumstances they stop thinking about their condition affects the people close to them. You’re really going to have to give yourself some time out more than you have, for your own sanity.
What a generous comment – thanks! I think Anthony just can’t accept our new reality but I’m the same actually – I can’t quite accept it either and I know that as soon as I do it will probably make his acceptance easier – not sure, never sure.
I see, you’re making things hard for yourself. Letting go is a very painful process. I guess sometimes you have to look further down the road and see what you want to see to figure out how to get there. Then making this type of decisions might be easier. Might, I said…
Thank you for your wisdom – yes, I am possibly making it more difficult than it has to be because I am still resisting the whole thing too – I have my thinking cap on again!
oh jules this is so sad! and yet i applaud you for speaking the truth plainly. too often people soften the message that so needs to be delivered thinking that the “sick” person can not be confronted as we would someone else.
sick people are not immune to being manipulative. i have been thinking more lately how i will know if and when we can not handle things here on our own. my husband is 20 yrs older than me and frankly i do not want to put him in the position you are in now.
i appreciate that you read my postings and if you ever think i need a little reality check, and it is not a burden on you, please be generous with the truth.
Well, in reference to yesterday’s ordeal, I just called him a selfish sh** on the phone and he laughed so at least we can still do the banter thing. I am trying to write something for myself to say to him next time it all comes up again (which is tomorrow). You are an absolute inspiration!
I feel so deeply for you Julie,
You’re damned if you do (take Ants home) and you’re damned if you don’t (take Ants home).
Thank goodness for The Gang (to keep you sane).
Laughter’s the best Medicine and you need a hella’ve good dose every day from now on.
Glad to hear you’ve got some good blogging friends in the same/similar situation, because no one else could possibly understand the strain, terminal degenerative illness places on the Caregivers.
You all deserve a medal. I just hope you can all get your lives back one day and I mean that in the nicest possible way.
Life can be a real Bitch.
V
xox
You are such a tonic, Victoria – and I am gobsmacked at how generous you are to me in the face of what you yourself go through. Every day is, in different ways, a struggle for you and for me, but you do it way better – I am learning from you – so many thanks! Juliexx
Thankyou for the kind words Julie.
I guess I am really lucky in my current life. 99% stress-free. I manage well most of the time, purely and simply because I am used to being on my own & there is no choice.
Besides I reached rock bottom in my life in Feb 2010 so from then on, the only way to go was……up.
Ming and I just had long discussion about going up from rock bottom – we start tomorrow Vicki – thx so much! Juliex
I am at a loss for words today and I feel so for you… God be with you…
Thank you! Your generosity of spirit is inspiring.
Lots of love to you Julie and wishing you strength and happiness. Honesty and openness are sometimes hard.
Peafowl are silly birds – I remember, because we used to have some when I was a child, and they would just take off and chase around like that for no reason at all. Stay strong!
Your comment shocked me because you called peafowl silly birds – what a dreadful thing to say – hahahahahahahahaha!
Sorry if I hurt their sensibilities!! 🙂
ha
My geese do this when they play in the pool! Well, OK they don’t fly to the roof, but I so enjoy their antics!
Julie, I’m sorry about Anthony, it must be frustrating and heartbreaking to know that he will not remember your talks. xo, Lynda
Thanks Lynda – love your geese story! Julie
Firm and fair, Julie – a conversation you had to have
I think tomorrow’s is going to be even firmer – oh so difficult! Thanks bluebee..Jx
So many of your other commenters are so much wiser than I, but I feel for you. Going through the same thing over and over has got to be so hard–I wish you an easier journey. I think that when you told Anthony that you miss him desperately too–that makes him feel better. In so much of life there are no right or wrong answers — we just do the best we can — and I think you are doing your best. (hugs)
You are so right in saying there is no wrong or right – you are wise!
Your encounter brought tears to my eyes – literally and I think it is a good thing that he could see and did acknowledge how hard it is for you too which is more than many would do.I agree with ‘Perfecting Motherhood’ in the ‘go with the flow’ bit as much as possible too as I’ve said before as it’s possibly easier all round. But having said that, there is nothing easy about it.
Yes, I need to get better at that whole flow thing!
Oh my Julie…my heart just hurt so much reading this dialogue. But you spoke your heart so well.. honestly… painfully. I think he heard you in the moment based on this…not sure how that works with PD tough – as far as ‘future’ goes. Good luck with the ‘speech’ — maybe if you are very consistent each time, he will start to understand and ‘get it’ better. I am praying – and yes— please take a stroll on that beach when you can!! Deep breaths — will help ~ and I know your birds and other animals are also soothing to your soul. Sending love and encouragement xo
Still writing the ‘speech’ – can’t seem to get it quite right. I guess by the time I do it will come easily out of my mouth. You are the best Robyn!
xo thinking of you Julie — I hope the words come and feel right ~ pain nasty here — we are starting with MRI (been a year) ~ Sending Love ~
Hi mermaid – I am thinking of you constantly – please get pain free – Love J
if I do… we are definitely going to plan a reunion!
I would so love to meet you in person!
me too… whole family knows you 🙂
Maybe I will be able to visit you guys somehow – I would love it!
Would be special – very!!
I’d want to pack a bag, get in my car and drive to where I was anobody. My God Jules!
I want to say that Ants cannot help it because of his PDD, but then I soon want to slap myself for sayong so because I don’t even know if that is true, and for crying out loud what difference would t make?
Having to face the inevitable cannot be comfortable in any way, but just as this is affecting the ill persons life it becomes a family disease as well. It’s a cruel thing when you”re the one who has to guide your loved one to face their diagnosis. I get it must feel better for them to live with heads stuck in the sand, I’m not saying what I would do. But unless their is all loss of mental faculty than the caretakers feelings have to be honored too.
Whew!! I’m literally shaking in my boots, keep fat fingering the keys and creating typo after typo.
This seems impossible for you. Will it ever be any better? Or is this what it’s going to be like every time/ Does he get what you are saying?
It’s a sad reality that he very well could drive you away. Not forever, I mean that your visits will start reducing just out of self preservation.
You just keep on watching the peafowl and laughing..~ BB
You certainly have a way with words BB!!!! Thanks for making me laugh again!
Thank goodness you have the birds to wipe the despair from heart. Remember to use them as a pick-me-up when things get hard. In fact, all your animals seem to bring humour to your life.
Irony is they were supposed to cheer Ants up too and now he isn’t here – argh. But you are right – they save the day, every single day!
Julie, I just realized that I have been getting these too… Just didn’t realize what they were! Here is an article on the problem (a spam vehicle) and how to get rid of them.
http://www.dailyblogtips.com/how-to-stop-trackback-spam-on-wordpress/
I’m not sure about the instructions on the set up. Makes me nervous. However, I know we both know how to hit the delete key! 😉
~ Lynda
The darling delete button!!!
I’m sorry. It’s so difficult for you both and Ming, too. I hate Parkinson’s.
Thank God for diversions and those moments of laughter and momentary joy.
I wish I could take you away for a good vacation. If I come up with the funds, I’ll email you. ha We could bring down a house! 🙂
That vacation sounds great but Ming and I talked about that last night and he said we already live in paradise – ha! Well, we do. He said the unthinkable – that we need a vacation from Dad.
Well, maybe. Caretaking/caregiving, even as much as you do with Anthony in the nursing lodge, is exhausting for the simple fact of what it takes from you – mental energy, physical stamina, emotional toll. I sent my mom off several times for a week long rest. You probably don’t realize how much you need a break. It would do you good.
There’s a resort about 50kms up the road – am looking into it thanks to you!
Hooray for peafowl! Playing is just plain fun…as it should be. And any release or distraction is good when you’re under stress. Doubt if you could keep up with them, though. Unless you have superhuman powers and can jump on roofs.
I’ve been practising the roof thing!
Just remember, even if you wear a cape, you might not be able to fly. Or leap without broken bones.
I’ll keep that in mind!
Sounds like he may be at the cusp of non-reasoning, making arguments circular, no matter which direction you take. Perhaps the end result of trying to reason, at this point, will be: he’s confused and angry (and doesn’t remember 15 minutes later), and you are confused and angry and sad (and you do remember 15 minutes later). Ahhh. My thoughts are with you. ♥
Either that or he is very devious!!
Sorry but dementia is no easier. My mom suffered from Alzheimer’s and we always had the same argumants except she had no idea who she was arguing with. She just wanted to go home every time I saw her- that was until she lost the ability to talk.
Oh that is heartbreaking.
Julia, don’t really know what to say after reading this …. but one thing is for sure – I don’t envy your situation – to be torn between sensibility and love. Understand Anthony too – nobody wants to die away from the ones that we love, especially when there is no strong physical pain that needs treatments and help to ease – all emotional. Woman, my heart cries out to you both.
Thanks again Viveka – I think I somehow have to de-emotionalize our situation – make it light-hearted again. I have a plan! You are such a gem – thanks – Jxx
Great to hear that you are thinking about doing changes and there is a plan. Just make it work for you. You’re worth it.
First day of a new month – time to turn the corner!
Wonderful, Julia ….
Like this attitude. *smile
me2
So unbearably sad.
Ghastly but I am trying to rediscover humour so I can take it into him from now on!
How sad for you all. So many emotional traps. I think you are right to try to reconnect with your humor and use it instead of reason. I’m so hoping it works.
It’s all a bit of trial and error these days!
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Oh Jules. That’s all….
But regarding the peafowl – mine have this kind of fun during mating season. It’s hilarious.
Yes, but it’s winter here now so I don’t get it!
ah, yes, and mine were not predictably adhering to seasonal rules as well.
Sadly I am mourning the loss of Jewel, my peahen, and strangely enough, Fig is not making much fuss. I thought he’d be calling more, mourning more…but he has been strangely quiet, just walking around the yard per usual.
I’m hoping he knows something I don’t.
Anyway, I have 3 peafowl eggs in the incubator, due next week, and wouldn’t it be beautiful if they would hatch out?
Sad for me to have lost her.
Have fun with those peas.
So sorry about Jewel! So excited about the eggs – you must keep us posted!