My post about Anthony coming home yesterday elicited a few encouraging comments for which I am appreciative, but also humbled, because I am not this hero I have somehow cast myself as, so I need to remedy that impression. No, I am much more the anti-hero, regardless of my good intentions. So this post is about honesty.
When Anthony comes home and wants to be the workaholic he once was, and draws attention to the things Son and I haven’t kept up with (lawns, garden, sweeping pathways, cleaning out the washhouse, washing the car), I become bitchy and resentful and say things like, “I’m doing my best. Why do you always have to find fault?” and sometimes I add a few expletives for good measure.
When Anthony comes home and can’t walk properly, I sometimes hurry him along and then (because he is heavy) thrust him into his armchair in a way that is not gentle and he says, “Why do you have to be so rough?” and I retort, “It’s the only way I can get you into the chair!” and he says, “Well, do you have to throw me?” and I snap, “Yes!” Sometimes we both then collapse into laughter so it’s okay, but sometimes we don’t.
When Anthony comes home and is in the armchair, asleep or semi-conscious, I sneak away and do other things because if he doesn’t want to watch Black Books or look at my blog or do anything except slump, I avoid him – yes I avoid him.
When Anthony comes home, I count the hours before I can take him back to the nursing lodge because he has somehow transmogrified into a job, rather than a person who I love and, even though this is difficult to admit, I love him more at a distance (both geographical and temporal). In other words, I love him the way he was and I find it difficult now to reconjure that.
He and I talk about these things which I realize probably seems strange, but he has always been my mentor, my confidante, my best friend so sometimes I tell him about how difficult he is as if he is another person, and he gives me advice.
“You will always be my hero,” I say, “but now Parkinson’s has got you.”
“I can get better,” he always says.
“No you can’t,” I say.
“But I love you,” he says.
And, just as I leave him at the nursing lodge, I say the words too – “I love you” – then I drive back home, sometimes teary, sometimes nostalgic, but always relieved, guiltily relieved to hand him over – my hero.
The picture below is of our two male golden pheasants who nearly fought to the death over a female and the one on the right, Phoenix 1, won the battle and now Phoenix 2 has been banished. I don’t know why, but it seems an appropriate picture for this post.
jmgoyder 
These birds are impressive! Gorgeous plumage! 🙂
He is a little lonely now but it’s his own fault for banishing his brother!
Hero is you — simply for being able to articulate and share this much of yourself Julie. I understand so much, and as I read your words… could relate sometimes to you, and sometimes to Anthony. Sort of spun my head around a few times.
As for your relationship…it is sooo beautiful to me that you can talk to your husband this way, and ask for advice in 3rd person. We can sometimes do that here too… sometimes it gets too emotional and we can’t, but I get it. The fact that you two can still laugh together through all of this hell you are dealing with, and all the charged emotion surrounding it, is magnificent – and further testament to you love for one another.
It’s an HONEST love story Julie. That makes it all the more touching and real. It’s ok — the guilt, the mixed emotions, the need to avoid, the resentment… it’s all ok in my book. You and Anthony are still both the heroes. I think most would agree… Please keep yourself safe and nurture the wonderful woman you are. And thank you for sharing your heart here. You touched mine with this one – big time. Sending Love ~ RL
If you don’t watch out, Robyn, I will create a Super Hero Award just for you!
Oh no!! Not even close — Super-Mess maybe?!! xxoo
You have been warned – hehe!
No…please, just that you feel that way is kudos enough for me. Super-Mess — can we make that award? xo
Don’t tempt me – I would be first recipient of such an award – hehe!
And yes – the birds are breathtakingly beautiful. Almost surreal to me!! xo
Yeah, they look like paintings don’t they!
no they don’t but so beautiful I can see how they could be art!
I’ve said it before but I love your raw honesty. And just a thought on Anthony’s complaining about what isn’t done: I suspect he feels guilty too. I suspect he’s angry because he’s not able to do those chores for you. Love isn’t all cherries and good times – I’m learning that from you….but every post you share SCREAMS love because no matter what you say or how you feel at points in time, it is clear that you love each other ❤ Love endures in spite of….
I never thought that he might be angry with himself – thank you so much for that insight!
To interject, hope ok, YES- I agree with diana – and from experience – when we feel ‘inadequate’ it can come out in all kinds of ‘needy’ ways… sadly have been there too. I’m near certain he experiences this. xo
You are so wise!
No not really – just living crap! And fyi – when my husband feels inadequate… because he can’t fix the situation (happens to be a brilliant surgeon so that does not help matters) he gets really icky! I have learned it’s not about me – it’s about him – and he really loves me deeply. God – this is all so hard Julie… I know. xxoo
You and I are on different sides of the same coin and it’s too cruel. I am well and you aren’t; your husband is well and mine isn’t – not bloody fair.
i understand more of what you are saying through this blog. it has to be so hard, and i can feel your pain as you realize this is not the same man that you had prior. i can see it in my brother also. he is freezing more and more now. i was doing research tonight, trying to figure out if he is now going into stage number five, with also being in stage number four. his freezing happens when he gets out of a chair the most. in this week alone, we have had four, i think freezing episodes
I just looked up the stages of PD again (even though I have done this rather desperately over the last years) and, yes, if there were a stage 6, that would be Anthony. What are you going to do when Al starts freezing several times a day? Terry, you need to look at a nursing home – please! For your own sake. Sorry if this seems presumptuous.
Julie…can I just say that you may be right…you may not be a hero…to anyone but Anthony. But, to the rest of us, you are human. And a spectacular human at that. I think sometimes you forget that Anthony is not the only one dealing with Parkinson’s. Yes, he has this blasted disease, but you, sweet woman, and Son, are also victim’s of the same disorder. You two are resigned to the ultimate outcome, whereas Anthony has not yet reached that point.
It hurts to hear you speak of yourself so…if you looked in the mirror and were truly honest with the Julie that stares back at you…would you tell her to do other than you have done? Would you tell her she will feel differently than you? Would you tell her she cannot have days when she’s overwhelmed or sad or frustrated or downright angry? Could you?
You have been so honest in your writings about Anthony and Son and your life….you must allow us as your readers and friends the right to believe what you say, to feel through you what you are going through, express our concern and sympathy…but at the same time, you must believe our honest reactions and responses. Not one of us could do more or love more or be more true than you have been and continue to be.
You ARE Anthony’s hero…he may not say it, but he knows it!
What a beautiful person you are, Rhonda! Thank you. When are you coming over for a coffee?
I wish that I could! I truly do. And I meant to say, but got caught up in my own words….those birds are gorgeous. I’ve never seen anything like them. They looked crowned in gold!
And now we just have the one! Oh well. He is like a splash of colour in the garden!
I would imagine he is. Simply beautiful in all his glory!
No, you aren’t perfect, but you’re living in an impossible situation as so many of us are who have family members with chronic illnesses. You try your best, you’re doing everything humanly possible. You’re not a hero, but you are stronger than you think, and you are not alone. In the words of Desiderata: Be Gentle With Yourself.
Thank you Cindi!!!
You really have to stop beating yourself up, Julie. Life will do that all on its own. You don’t have to add to it. Repeat after me ten times. I am okay. I am okay, etc. (You get the picture.)
Sorry – was just getting tired of people thinking I’m this superhero.
Okay okay – I’m okay x 10!
That’s the same thing my partner says to me. “but I love you” seems to go beyond and above any physical problem. Anthony’s situation (he is totally an anthony by the way) is one that will bring out the best and worst in you. You’re human. I’m sure we all send our appreciation cause we want you to be strong 🙂
Another Anthony!
I love your honesty and you shouldn’t feel guilty about finding your way through a trying time.
Thank you Ashley!
Honesty is the best policy. If you admit your feelings you can work through them. Maybe you are angry and avoiding, but that’s not the point – the point is, you keep bringing him home; you keep visiting; you still love him, or the memory of him.
I watched my father-in-law, who loved my mother-in-law more than anything in the world, go through a similar process after her stroke. The person he married was not the same person at the end; no wonder he was angry. He felt cheated and sad and lost.
Don’t be too hard on yourself; keep being honest with yourself. And take a time out whenever you need it – you’re not a saint, you’re a human being with limits.
Thanks Tilly – I really need to get my sense of humour back! Juliex
Ok Julie, so you’re no hero … call it anti hero, honest, whatever it is. it’s human and we all relate to it. The thing is we do the best we can … if we could do it any better then we would … that’s just how it is. And as Rhonda said on this post if you could see yourself objectively you would tell yourself the same as we tell you – not to be hard on yourself … cos you are doing the best you can do.
Okay – I get it baby cheeks! Thank you!
Dear Julie, I love your honesty too, as all others… In your writing I can see your heart and always it is beautiful heart of a wife, friend, mother, person… For me you are an hero and also you are both an hero for each of you… You show us how important to have a strong relationship between man and woman or in another saying between a wife and husband… You are not living an easy days I can see this, and also not easy for him too. But the love and this beautiful relationship is great. And also your sharing is great too with us, wisely dropping into the words… My heart always with you, Blessing and Happiness dear Julie… And yes, the photograph is amazing too, Love you, nia
Thank you, again, nia! Your phrase “wisely dropping into the words” is brilliant and I am going to steal it – ha!
Julie – Your blog says so much about you and how much you care. That in itself is heroic. I know, because I never felt I could do enough taking care of Dad. When a loved one has such an illness as Parkinsons or other body and brain stealers, we the caregivers, are left mourning the person we once knew, the freedom we once had, and a life lived differently then we planned. Treat yourself kindly, as you deserve a medal for knowing what you can handle and what is in the best interest of Anthony and the birds and your son. If you don’t take care of Julie, then they all lose. There is no right way or wrong way to do this, there is only the way that perserves you as a whole person. In the end, you must survive, that to me is the heroism. Those that keep people in the house when they can’t care for them, or the animals, who end of killing each other, in the name of trying to do it all themselves, is not in anyones best interest. Keep up the great writing and the deep caring. – Lorian
Thank you, Lorian, for this wonderful comment. Survival – yes! Juliexxx
keeping it real again julie!!! 🙂 Humble honest and with heart, my lovely freind is fighting cancer and I have sent a few of your blogs to her. so many struggles, so often shared. bless u lovely xx noone is perfect jules, the good with the bad, but the greatest gift we have is love!! we are nothing, but everything with love, how awesome to have and be loved xx
mmmmmm actually have i told u lately how much i love u!! sure do 🙂
You, dodsy, are a one-off! Love you too – Juliex
Appreciate your total and brutal honesty – you are merely uncovering the part of you that is human–we all have two sides, and sometimes our “shadow” side is hard to face, but face it you have. My heart goes out to you…………others have been in similar situations and thought thoughts that are unworthy–you are not unique in this. Be more gentle with yourself.
Yes, I should look my shadow in the eye – thanks!
You are traversing one of the hardest trials of life, and you are responding appropriately. Raw emotions and reactions are hard to face, and it’s even more difficult to expose our weaknesses and frailties to others. This experience is not a walk in the park. In your honesty and openness, you, my dear, are gaining health and wisdom.
We will be here to help you through this, Julie. Fortunately, you have plenty of support. When Dad suffered, many of their “friends and family” disappeared, unaware of how devastating it was to Mom and Dad. I wish I could be there to offer my shoulder; you’ll have to take my virtual one. I am uplifting you to our Heavenly Father in my prayers. XO
You have a great shoulder!
I can appreciate your anger and frustration, and your relief when you take him back to the lodge. I was a nurses aid and saw what Parkinsons does. It’s a horrible disease, much like Alzheimer’s which robs his victims of so much, and leave the family dessimated.
You do deserve applause and praise, because how many of us would give up. Find excuses not to visit as often, anything to avoid the reality we faced. You are a brave and lovely woman, and I can feel how much you love Anthony. Probably this is the truest test of your love.
I only hope I can keep it together should I be faced with something similar.
When I put myself in his shoes it gives me such a stark perspective – argh! Thanks aa!Jx
There are times I look at my husband and wonder if I could take care of him if he got ill. Yikes!
Keep writing, I love your style.
Thank you – continuing to write little bits of this is keeping me sane!
Beautiful photo, amazing birds!
Thanks – am going to get back to your blog soon – sorry, just haven’t had time.
I read your stories & I try to just like them, so you don’t have to write back. I just loved those birds. You are missed, HOWEVER, we both have a lot on our plates. Just do what you want to do. Some blogs, I don’ t even open b/c I can tell i’ll hate it. Its supposed to be fun or an outlet. I wouldn’t have been able to make it 6 weeks bed rest with this blog.
You are a star!
Well that is the problem with being human…you’re human.
And a worm!
I am so blown away by your honesty in this blog, I can’t help but admire you!
I got a bit sick of people thinking I am so good when actually I am quite evil – hehe!
Great photo of the golden pheasants.
I looked ‘Hero’ up in my little Oxford dictionary (which is my constant companion on my desk since my intermittent short term memory plays up every now & then with the spelling of the simplest words).
You certainly don’t fit into the 2nd definition ie principal character in a play. Or the 3rd definition ie illustrious warrior or the 4th – demigod.
But definition #1 says one greatly regarded for achievements or qualities, so you fit into 1b. that is, one greatly regarded for qualities. We always admire people who keep on, keeping on regardless.
And so…….Julie………..you can be regarded as a Hero. There are so many Heroes in this World so you may consider yourself as one of a number of those who we admire.
You’re not perfect. Who is?
Ah, the dictionary – good idea! As to who is perfect well you don’t do badly!
On my last visit to my father before he died, he became so angry at his inability to do something in his workshop that he had always done with ease, and snapped furiously at me and my niece when we tried to help him. He later apologized and what he said was so heartbreaking because I knew that he finally realized that things had changed irrevocably for him. We, his family, had realized this long before, while he had been in denial (His wonderful oncologist even said to me, “It is time your father accepted that he is dying”). I think often this denial is the only way a person can cope with their suffering, but it is very difficult for those who love them to deal with. It is perfectly natural to want to withdraw from the demands of the pretense that everything will be OK. You have to preserve your sanity and strength and sometimes withdrawal/avoidance is the only way to do it. And what you have said here about your impatience with him is grief in action – it is terrifying for us to accept and watch someone we love suffer in this way and that impatience is just a manifestation of our own anger and grief at an intolerable situation, not at the person. You are doing the best you can – don’t beat yourself up.
One of the things that has struck me most in your comment is the dying thing. Despite our honesty with each other, Anthony and I have not broached the subject of death and dying. You have really got me thinking here and I am very grateful for this – thank you BB!
Apologies, Julie – I did not mean to suggest anything about death in your situation – I am not sure how Parkinsons disease progresses in the long-term and whether this is a consideration at this stage.
No need to apologize at all! Anthony’s prostate cancer diagnosis several years ago gave him a couple of years max. to live and he has defied these odds. The Parkinson’s doesn’t actually kill a person, it just makes life hellish so I am very glad you mentioned death because it is something we have to look in the face – much gratitude!
Great honesty…. I understand what you mean and how difficult things can be. No-one is expecting you to be perfect except perhaps for yourself. The good person is the one who realizes that they are flawed and in that knoweldge keeps trying to be more than they could be.
Well I won’t make any friends with this, but why the heck does it have anything to do with hero anyway? You didn’t choose the situation, you deal with it the best you can, and if that deserves scolding on days when you behave in ways that aren’t hero-like, then we all sure as heck have a lot to scold ourselves about. At least I do. What about the days I treated my husband like a husband with typical wife-type nagging, just a few days before he committed suicide. (Thankfully on the morning of that fateful day, I spoke loving and supportive words and that is the only thing that saved me from losing it totally later). You speak honestly and I hope that it helps you and brings you support. It is the very least that you deserve! As one of my doctors said “you are one of the good ones”. That is also you. I wish that it worked for me to blog and share this type of personal stuff, but it doesn’t. It just magnifies the pain. And reading your post has put tears all afternoon into these eyes. So forgive my weakness in that while I would help you in any way that I could. Chances are I can’t. So, I will say a big thank you to all of those who follow your blog that can offer words of wisdom and support. Right now, I’m just sad for it all, about what you must deal with each day, about my friend’s loss of her life last week, and my weakness in handling my own life. And now I must push it all down again. sorry, it squeeked out a little tonight after reading your post, but it just hurts too much.
I feel terrible that I might have caused you more pain and feel so privileged by your comment. Thank you soooo much!
please don’t feel bad, you did not cause me more pain, it simply opened the flood gate a little bit here 😉 the loss of my friend last week is pretty raw, and a little of the flood probably needed to happen. Thank you for your kind words about my late night rant. I so admire that you are able to share your world with us! It’s pretty nice to know we are all humans and you bring people together with your wonderful writing..
What a lovely comment and I thank you – so sorry for your loss TK. Juliex
oops, already regretting that stupid rant. so sorry. Please feel free to delete. Late night here got the best of me. 😉
It’s a wonderful rant!
Heros aren’t perfect beings. They are the ones who show up and do what is needed against impossible odds. They are scared. They are angry. They are impatient. They cry. They yell. They worry. They have needs… They are, after all, still human!
Personally, I am just thankful you are not perfect or we would have to call you god, create images in your likeness and make sacrifices in your name.
Just saw your other comment too – thanks Linda! I love your humorous response! Juliexxxx
I was also going to say but others beat me to it — that Anthony is feeling all that you feel – the fear, the frustration, the anger, the resentment at the disease and at himself for having the disease and not being there for you and son. And son too is dealing with his own version complicated by the impatience of youth and his own health issues.
So many wonderfully insightful comments – Wow!
I wonder of the photo reflect your feeling that you have “banished ” (your word) Anthony from the nest, and are blamomg yourself for that which is out of your control.
When I think of you as a hero Jules it is because of your raw honesty, I know without a doubt that these very same feelings you are now having are going to be mine one day not too far off in my future. The very same. I know this is why I first felt this kindred thing with you. Only I did not have the honesty to admit that until now.
That is what I find heroic, you being real, honest, and raw.
Thank you BB – your comment means a lot. Juliexx
Don’t beat yourself up Jules. You’re trying as best you can to cope with one of the most difficult things that can befall a human being. Not even the Dalai Lama could maintain his equanimity under such circumstances for 100% of the time!
You’re not a super-hero, thank God. You’re human. And that’s what I like about you.
Thanks Judith!