I don’t think I have ever used the word ‘awry’ before so it looks a bit odd when I write it. When things go awry = when things go skewy, veer crookedly off the planned plan, transform pleasant into unpleasant. Awry is my new word for what is happening, unhappening and happening again.
This morning one of Anthony’s nieces and her husband travelled an hour and a half to come and see him. Initially, the plan was that I would order us all lunch at the nursing lodge and eat there, then I realized that there was a restaurant on the beach around a block away so I organized for Ants to be ready in a wheelchair and we would all walk down. So J and D arrived at the farm, we caught up with each other and had a coffee, then drove in to the nursing lodge.
On arrival at the nursing lodge, Ants was in a wheelchair ready but looking angry. Even though I had told him yesterday that D and J were coming and he said he’d like to go to the restaurant, he’d forgotten and was quite cross with me for not telling him. Nevertheless we set off with D pushing the wheelchair. The restaurant was pretty ordinary, nothing flash, and Ants immediately said to me in his new mumbly voice that it was pretty rough but we all ended up having a nice meal and yet Ants remained angry and kept having little conversations with me that I could hardly decipher except that his anger was potent.
I got a bit of a shock because Ants is never angry or rude or ungracious or cantankerous but today he was all of those things. On the walk back up a rather long hill to the nursing lodge he refused to be wheeled in the wheelchair and insisted on walking – very slowly – holding my hand. He somehow got to the top of the road panting a little and D, J and I finally convinced him to get back into the wheelchair. It has been months since I have seen him walk this far and it was obvious that he was trying to prove he could do it in front of J and D. Of course I realized this at the time and I would have had all the patience in the world if he hadn’t been so aggro.
We got him back to his room and transferred him from the wheelchair to his armchair, had a bit of a chat but it just wasn’t working; he was still angry and when I sort of told him off in a flippant way he said it wasn’t J and D, it was me he was annoyed with. Oh great, I thought. So I explained we had to go but then he insisted on walking us all out. I tried to stop him because he was exhausted, but, as usual, I relented, fetched the walker and we all slowly made our way out. We all tried to stop him coming out of the front door but he wouldn’t stop. J and D said their goodbyes and walked up to the parking lot to wait for me. Once they had walked away, I burst into tears and said to Anthony, “Why? Why are you so angry with me? I organized this lunch for you with D and J who we haven’t seen for ages and you were just horrible, especially to me. Why?”
This anger thing is new. Oh great – what fun. Yesterday was total confusion and today anger. What next?
Yes, yes, I know it’s the Parkinson’s Disease Dementia crawling around in his brain – I know that and I am not complaining because I understand and empathize and his homesickness is like a constant haunting taunt for him and me, and I love him so much but he really hurt me today and maybe taking Anthony out, or home, is a bad idea – unsettling, disorientating, confusing. Maybe I will have to give up.
Awry.
jmgoyder 
Yes. It’s awful and you have every reason to feel exactly the way you feel. Anyone who has ever gone through this felt the same way. Sending you a huge hug.
Thank you. Feeling at end of tether but tomorrow is new day as you well know!
I hope it is a better day. You never know when it will be a day with a smiling polar bear : ).
Aha! Thanks so much you beautiful girl.
When things go awry, you best wait them out before making new decisions. Sorry about the bad day.
Yes, and thank you – I just think bring Ants home or away from the nursing lodge is perhaps making it worse when he has to go back. I don’t know. It is a great nursing lodge but of course he doesn’t want to be there. Thanks DD!
I remember my Dad feeling the same way and he said “I never thought you would do this to me,” which broke our hearts. But we all knew it was the safest place for him and it saved my Mom, the caregiver, in the end.
Things change and you have to adjust as you best can.
I am trying but I keep getting a shock. Silly me.
I think you`ll find that as the PD advances there will be more and more changes and it will be a challenge for you to keep adjusting. But you`ll get through it. You`re pretty strong and when you need to reach deep down inside for more strength you`ll find it. I know you will.
First, good for you for trying–and second, I guess it is a lesson learned, but that sounds so harsh as you are only trying to do your best. I admire you–I am sorry things have gone awry. I hope there is a time you can irradicate this word from your volcabulary. (hugs) (hugs)
I have never seen Ants like this before – bit of a shock I guess. Thanks so much!
so hard to have to figure out how to deal with new things that come up – (hugs) again
When you’re fed up with things going awry, you could think of them as going agley as in the Burns poem:
The best laid schemes o’ mice an’ men
Gang aft a-gley,
That sounds as though it would apply to your outing. It’s very hard when people are cross with you when you are doing your best.
There is no need to get all literary on me – now I have to google agley haha!
I adore you and Mrs TP!
Oh sweetheart, I’m sending big hugs to you. Poor you, because you had to deal with all the aggro. Poor Ants, because this is not really him you are dealing with. Ants is really on a chair in another room, and you are left to deal with a dodgy partial transmission that makes little sense, to him or to you.
I hope you get some rest today, and find some peace and nurture for yourself. Bless xoxo
I have just made the decision not to take him out any more – difficult decision. Thanks CC!
So so sorry Julie…. please take some really deep breaths – this obviously took a toll on you. I know when you have a bit more distance from the incident you will be able to get your power back. Right now it’s just incredibly hard – overwhelming and sad. Maybe try to do something to refocus – hang with your birds or have lunch with a friend etc. then revisit. Anger from a loved one who is not himself to begin has to be utterly confusing and disorienting… yes I get the word “awry” — alignment – lets shoot for that and then you can decide about plans for future with outings and Ants… Sending big hugs and lots of LOVE! R
After hours of stupid tears I have decided not to take Ants out any more – too hard. You are such a gem Robyn!
Oh, this is hard. It was so rough for me to take my mom back to the nursing home. Every fiber in my body screamed “no” every time I did it. Her reactions to going back there certainly did not help. Love cuts deep sometimes.
So hard isn’t it.
Yes, Julie, it is. Sending hugs your way.
Oh dear Julie, you are so nice. But I don’t think that he can see everything from your side too… Nothing is easy for him. But for you too. I can feel you dear, I hope tomorrow will be a better day for you both. Love and Hugs, nia
You are so lovely, Nia – thanks so much.
Dear God, I HATE Parkinson’s!!! I am feeling for you over and over again! We could never predict how it would manifest from one moment to the next, but you can’t let the manifestations in him overtake YOU. You can actually see it and understand it; he doesn’t. But I am sorry that your feelings were hurt, and I’m sorry for you that you and Anthony are going through this cursed disease. Blessings and prayers…
This disease is the absolute pits – thanks so much for your thoughts. So much!
All the insights and knowledge you have about Parkinson’s does not change the normal emotional response at being the displaced target of his anger, does it? I’m so sorry things are awry, Julie. It is so difficult. I’m sending you a cyber hug.
He is usually so even-tempered so it was an awful shock.
Julie, Julie …. I would agree with Nia here .. he can’t relate to how you see things and what you feel – everything is all about him where he are today. So so sad. Things are very complicated for him too and confessing, but he are not able to sort them out – as you’re – feel so much for both of you. But you tow are on different planets and I doubt that they will meet again as it has been. Not much of a comfort in all this .. I know – but there will be better days and I hope of all my heart that tomorrow will be one of them. Loads of me .. to you both.
I have to get stronger!
You are so strong … but you have to get tougher
Oh how difficult it must be.. not knowing what to expect next… from your blogs I’ve surmised you are a strong woman… and will learn ways to handle the unexpected… keep the chin up … hugs to you…
I don’t feel strong.
Julie it is so difficult for the family. My dad became unreasonable and very unsettled when he left his familiar surroundings. He became like a petulant child! Please don’t take it personally. My Dad too tried to hold onto his brain with all his might. He would insist on playing the role of the perfect host…. Thinking of you!!!!
Thanks for your story and your understanding.
Oh Julie this is such an awful disease..and your posts evoke so many memories of my dad..You won’t give up – it’s not your nature. But perhaps a break from this so you can renew your spirit and your strength? Might be a good idea..love, m
Yes, I am thinking of a break – thank you!
Take a break honey.. give yourself a break.. c
ok
So sorry to hear you had a bad day. I know it’s distressing and I daresay that there will be more of these days to come in the future.
I can also appreciate that in your love for Anthony, you want to do everything to give him some joy in his day.
I guess the worst of it is that Anthony’s moods are so intermittent, you just don’t know what to do or how he will react. You try one thing and it works out, so you plan more of what you think
‘works’, then when they fall in a heap, you try so hard to think of something different (and that might also fall in a heap).
Whatever happens, remember that you’re strong and will get through this. You WILL get through this difficult time.
I suspect taking Anthony out to a restaurant is not just about him & giving him a change of pace & some social contact, it’s about you too. You need something to keep your spirits up. You need variety in your time spent with Anthony.
I’m thinking of you.
Vicki
xox
Thanks Victoria for your incredible understanding of how this is!
I do not blame you for bursting into tears and it is so hard for you never knowing what each day will bring with Ants, at least you are still there for him some would just abandon him because dealing with him is “too hard”
I actually wanted to punch him in the nose!
Julie, I’m so sorry. It can’t be easy for you. You remember everything that happens and Ants may forget this day. Your experiences give a whole other meaning to ‘love hurts’ I wish I had some magic wand I could swing or anything helpful at all to give to you. You are in my thoughts and prayers. ((hugs))
I wish you had a magic wand too!
I’m glad I usually end up commenting last, or at least towards the end, so most of these wonderful people don’t see what I write….’cause right now it’s just this.
‘FUCKING HELL”
love you U
This is definitely my favourite comment!
missed ya…glad I got to see you before I leave. xoxo
I wonder if he’s angry with you just because he is angry about his disease. You are the place he dumps that. There’s nothing tougher. Perhaps tomorrow he will rebound and enjoy your time.
His angry behaviour was so out of character and I think it is the creeping dementia doing it. I hope it doesn’t get worse.
My Gran would become frustrated because she couldn’t understand the situation anymore – eventually she seemed to stop struggling to understand and decided to just be.
My heart keeps breaking over and over for Ants – not sure how to stop this!
I think you are doing all you can. Taking charge of your life, giving both Ming and Ants structure and comfort. You just have to take it as it comes – there will be some good along the way that will surprise you. Hugs.
Thanks for this!
Wow. As a control freak, I would have a very difficult time with plans going awry all of the time. I don’t know how you do it!
I just keep trying and failing – maybe I should stop trying?
wow, Julie, that had to be so darn hard. His anger made it seem so real to you, but it was not Ants that was angry, it was the part of Ants that PD has taken over. I would have been hurt and crushed too. I have a bad habit of not wanting to be where I may be hurt. It might be hard for me to go back to see someone that hurt me for a few days………………….I am bad aren’t i? I just hate hurting worse than what I am already hurting. do you understand this?
Yes you are right – it is the PDD doing it – argh!
Wow Julie, I just read you’re taking a break, & now read this one & I understand more.
First, I love the word ‘awry’ – just looks & sounds great! And perfect for this day you’ve had. I agree with the comment above that it’s best not to make new decisions when things go awry. I now really, REALLY hope you enjoy the break. And don’t feel a need to respond to this comment – is totally fine enough to know you’ve received it 🙂
Sit back, Jules.
You are doing what you can… And beyond that, it is the bug called Parkinson’s. Ant is still really glad to have you around him, he just cannot say it to you 🙂
You know it, girl. He loves you for all that you’ve been to him and the Superwoman you are to him today.
Lurrve,
Ritika
Sad that it was such a tough day. Be kind to yourself and take some rest.
I’m sorry. Understanding in your mind doesn’t negate the pain in your heart. 😦 I hope you’re able to do something kind for you this weekend.
((hugs))
Just because you know the reasoning behind it doesn’t mean it won’t hurt. Sending you hugs.
I told him off today and it worked (sort of!)
Julie, I am sorry you had such a rough day. Take care, Bill
I use awry often. It seems to fit me and my life. And I’ve gotten sort of used to it. But I cringe at anger, and I’m sorry you got the brunt of it. Even though they don’t mean it, it hurts.
Huge hugs. Even knowing that the anger comes from the disease, not Ants, I imagine it is hard not to take it personally when it come at you through the man you love. How do you tell a disease to stop? It is bad enough a disease is not something you can rationalize with, but now it’s made Ants in it’s own image. Don’t let it do the same to you. Hope you take some time away.
‘In its own image’ – yes.