Against all advice from friends and family, and against my own decision not to bring Anthony home anymore, I did so anyway today.
I couldn’t not. I couldn’t not.
During the drive home Anthony was utterly silent. It then took awhile to get him from the car onto the front veranda, even with the new walker the nursing lodge let me borrow.
It was sunny to begin with, so I brought Anthony a drink, sat with him for awhile, then went inside to heat up the chicken soup I’d made him. When it got cloudy outside, I had to bring Anthony into the kitchen which took ages because his meds hadn’t kicked in. I put the heater on because he gets so cold all the time. All of this was silent except for me saying, “1, 2. 3” to help him walk.
I served Anthony the soup but couldn’t eat any myself because I was feeling weirdly nauseous, and terrified I wouldn’t be able to get him back from inside the house to the car to take him back to the nursing lodge in time for his next meds, and in time to pick Ming up from his music school.
The day was filled to the brim with silence. I kept saying, “Why don’t you talk to me anymore?” and Anthony kept trying to, but couldn’t.
Little snatches of conversation happened, but I had to instigate them all because Anthony seems to have forgotten how to converse.
Anthony only uttered one beautiful sentence as I was getting him into the car to go back the nursing lodge, and that was about his guinnea fowl who seem to congregate close to him when he is home, even when he is silent; they seem to sense his presence. “Look at them, Jules,” he said, with his new quarter-smile.
They were our first birds and they are very noisy, just like Anthony used to be – loud and laughing and utterly lovable.
Otherwise, it was all pretty quiet today because Anthony’s silence was deafening.
jmgoyder 
Oh Julie what a bitter sweet day – I can only imagine what you are going through but even though I don’t comment very often I do read every one of your blogs and enjoy them immensely – x
How lovely to hear from you Bec – thanks! Jxx
Gosh, this is so heartbreaking, Julie.
I am going to try to continue to bring Ants home once a week just for the day – not sure!
I think I’d want to try to do the same…
He’s very heavy to move now – will keep trying – thanks bluebee! Jx
The truth is, he’s living in a different country now. The good news is that every now and then he sends you a postcard – like that sentence and that quarter-smile.
What a brilliant way of putting it – thanks!!!!!!!!!!!!!!!!
Maybe reading him the Love Story would fill the silence for a little while? I know that if I were Anthony I would consider that a most wonderful gift.
Carol – hi! I have tried this kind of thing but he gets bored. I might try again to take it into nursing lodge and read bits to him there. Getting him home is so physically difficult now that anything beyond that (even having a movie on) is too hard. Anyway, he has never even read my book – ha! How are you????
Carol has hit the nail on the head… your story is so fascinating and heart reaching.. I would recommend the same… read him your story, it would probably mean so much to him and the silence might be broken with memories of his own… how wonderful it could be to spark a memory or two in him…
Okay – I am now convinced!! I will take my laptop in tomorrow when I visit and try it out. Thank you very much.
that is how silence is sometimes – my heart breaks for you, but at the same time I am proud of the way you never say die
Yes but what if I want to say die?
Then it is time – it is time for you to take care of yourself and not everyone else – there is nothing wrong with seeing a situation for what it is, that you have done enough, and it is time to quit. When you are ready to “say die” then it is time.
I can’t let go.
I don’t blame you – after reading your love story I think I understand the depth of your love for Anthony – it is a beautiful story–you are a great story teller and writer –it is hard to put some things into words–but you do it so effectively
Thanks for this encouragement – so much!
When I read your post, I was reminded of a song, originally sang by Keith Whitley, but my favorite version is by Allison Kraus, go to you tube and play it, it’s called “When you say nothing at all”. HUGS!
Gonna look it up now!
Julie, I’m glad you were strong enough to do this. Your drive to do so is an inspiration.
~ Lynda
I am going to try to do this every Tuesday when Ming is at music school – thank you Lynda!!! Jxxx
Silence is Golden.
Never forget that, Julie.
This may sound strange, but I used to tell people, that the reason I never married was that I never found a man who knew how to be silent.
Just being together in the silence is a precious gift. It’s about being comfortable with each other and loving each other without having to say anything.
Perhaps now…..is the time for you to just Be….. sharing space…… sharing time with each other.
True love needs no words. Anthony in his silence might be remembering the past and be glad of your presence, silent as the conversation may be, he may talking with his mind and eyes.
What an absolutely ‘spot-on’ comment, Victoria, and you are so right – just being home didn’t need words. Thank you so much for making me realise this. Juliexx
It was at least nice he made it to the farm. I bet he dreams about it. You made a dream come true today.
Yes!
i got this ache in my heart as i was reading every word. i can’t help it JUlie, your words hit so close to home. of course, Al can still talk, but the past two weeks i catch him staggering to think what he wants to say, like he is searching his mind for those words, and then sometimes it is like the words were beginning to get backed up in his brain, so he ends up stuttering. he was so nice yesterday, but he kept forgetting many times the words he wanted, or he could not remember names, and would ask, and then last evening he kept asking me the definitions of different words he heard on TV. he has never done that before, but yet once in a while, i hear him speak big words, that i have to even look up to see their meaning. i just don’t understand this illness. he was so happy yesterday, full of smiles, and yet confused and innocent
Thank you Terry – so much – it is so wonderful to be understood! Lots of love to you and Al in this ongoing ghastliness/ Jxxxx
you mean shit life??? LOL
Naughty Terry!
Interesting what can make a breakthrough in the silence – hard not to have a reaction to those noisy birds.
Yes, they are very noisy!!!!!!!!!!!!!!
Dear Julie, I agree with all your blogger friends, you should read your love story. When I read you, I felt as if I lived, I saw, you almost reached my heart into the words… You are so nice dear Julie, and fascinating your story and reaches my heart. One of the comments (shoreacres says) about postcard, was so nice too, I agree with this one, “he sends you a postcard – like that sentence and that quarter-smile.” Thank you, love, nia
Oh thanks nia – isn’t shoracres wonderful! Love you too – Juliexx
I am about to go to bed – what time is it there?
Yours is a spirit that has so much passion, so much flame — and now so much conflict. I understand why you just had to try to take Anthony home Julie. I would have done the same exact thing. I admire your unrelenting love and will in all of this mess. I know that despite the difficulty and sadness of him being unable to communicate you are still fulfilled in doing this loving thing. As someone above mentioned however, you should make it your #1 priority to take very good care of Julie through all of this. My thought was to hire someone to help you if you are planning a 1x a week visit. Is there an agency of some kind there… maybe volunteers who can assist you with moving him around? I am in awe of your strength and spirit Julie… I know you are utterly exhausted and don’t feel strong — but you are … Love you much xo
I am going to look into hiring someone – thank you for this brilliant brilliant brilliant suggestion!
So glad –would make all the difference I think. Scary to manage this alone. There must be services for this ~ or someone who can use a side job for a reasonable fee. Keep me posted!!xo
I am putting my thinking cap on as we speak – thanks beautiful Robyn!
So sorry about your day, but glad you followed your heart and brought your Anthony home. Sometimes we just need reminders that our “no”s are for good reasons. They’re so hard to say. But glad the guinea fowl saved the day.
They are his favourite bird – too bad he can’t have them in the nursing lodge – can you imagine?
It’s so nice that you can take Anthony home for a day while it’s still possible … and even tho he can’t speak it would still mean so much to him.
He can still speak but just doesn’t seem to want to anymore – if I ask him a question he’ll answer etc. I am finding this as hard as the physical stuff – argh.
The sentence he managed was a good one. “Look at them, Jules”
He remembers…he knows…they were once babies and are now grown…you raised them together (or they raised you)…he sees the past and remembers the happy feelings because he shared them with you with that new smile of his. And, he acknowledged his happiness at the memories….with them and with you. Yup…a darn good one!
You have hard days ahead but I’d try to do the same as you. When the time comes Jules, you’ll know it, but you’ll still fight it. I don’t see you doing it any other way. It’ll be harder for you, but you have to do it your way.
Much love,
R
Lovely comment Rhonda – thank you!! Jxx
That is lovely.I am sure it meant a lot to Anthony to come home and though it is bittersweet think it meant a lot to you. Hugs to you Julie.
Yes, very worth it!
I know this isn’t the same thing – but I was in a coma when I was younger. I remember much of what was going on around me at the time, even though I couldn’t respond to it. Anthony could be internalizing so much that you don’t know, and may never know, so the more positive experiences you can give him, the better, in my opinion. I think that you are so lovely to make this supreme effort to bring him home once a week, and he probably appreciates it more than he is able to express.
I hadn’t thought of it that way – thank you so much. A coma!!!!!!
I remember the first time I noticed silence between Bear & I. I was flabbergasted that it felt normal and good, That there was not this compulsion to fill it up with nonesense. That our love alone, as cheesy as it sounds, was enough to fill the room. It was never an awkward silence.
My point is that I know you recall that same feeling from before, that there was no reason to fill that silence up, that your love was enough. Remember that Jules, and let your love and all these years you have together fill that silence up.
It’s really enough at the time, anything else may just be you needing reassurance from him, that’s natural and okay. Only now because of PDD sadly he can no longer give you that reassurance, so you must find it in that silent love. Just look a bit deeper.
Did that just sound like a lecture? If so Jules I’m so sorry, never would mean to say anything that sounded like a lectire at all. What d I know?
Gentle hugs my friend~ BB xoxo
Thanks for this, BB! Yes I know what you mean about the comfortable silences, so I should just accept this extreme silence, but I keep resisting it. In fact, every time I see Ants which is nearly every day, I get a shock again. I love every single word you wrote here and cannot thank you enough. Juliexx
I haven’t been keeping up here. I know what you are facing since I was with my mother and my husband in the same situation. It’s hard to know what to do. I am glad to see that your followers are helping. Please don’t risk taking Anthony home by yourself without a portable wheelchair and a makeshift ramp to get him in the house. If you could manage to obtain those two things, you could be far more relaxed about handling him. He would be more secure and comfortable too. I wish you both all the best during this last of life time. Don’t browbeat yourself with questions about what you should do or should have done. You are doing really well with this. I am amazed by your intuitive response to Anthony and your real grit in managing all of this!
So did your mother and husband have PD too?
No, my husband died of cancer and renal failure after a long illness. My mother died after 15 years of health problems and being totally unable to walk. Taking care of them was challenging, but I wouldn’t change it. If we get by the logistics of caring for them, the rest takes care of itself. Bless you. I love the episodes of The Love Story. Reminds me of an old novel. They are beautifully written and poignant.
You have certainly had your share of caring – thank you George!
Yes it is so sad when they forget how to converse my nan is like that she never says more the a couple of words now days, she will say things like I love you too when we tell her we love her but that is about all, it is when her eyes don’t sparkle that makes me the saddest but there are more good days then bad meaning at most visit her eyes will sparkle and light up when she sees me and mum and of course little Temika.
How old is your nan?
How heartbreaking and wonderful all at the same time.
Bless you.
Barb
Thanks Barb!
You don’t need my two bits’ worth, but I’m thinking of you.
Your two bits’ worth mean a lot – thank you Anneli.
Utterly heartbreaking. What a cruel disease it is.
It really is one of the cruellest and I have seen a lot now – argh
Well, I admire your commitment very much. But if you break your back (or your mind), you’ll be of no value to Anthony. Do what you can, but not to the point of hurting yourself. And that’s okay.
True.