Yeah, I know I keep calling the place where Anthony now lives a ‘nursing lodge’ but that’s only because it sounds a bit nicer than ‘nursing home’. Also it is called a lodge by its owners and I like that because it is so different to what I imagined a nursing home might entail. Anthony is in the ‘high care’ section, but he has his own room, his own bathroom, a view to the garden and it is all quite spacious, a bit like a motel room for one person. If he makes the slightest murmur, someone comes to help, the meals are delicious and the staff are beautiful – not just the nursing/caring staff but also the domestic and kitchen staff. Everyone seems very fond of Anthony, who they call Tony, which is what most people have always called him anyway, and everyone knows my name too which I find remarkable and lovely.
Today I went in at noon and so did my fantastic mother, and the three of us had lunch together in Anthony’s room. His meal was good, the sun was shining through the window, and I hesitantly brought in two more pictures from home to hang on Anthony’s wall. I had already brought in a jarrah/cast iron mirror one of my brothers made us a few years back, a huge clock I bought the other day, and a poem written by one of his best mates for his 75th that we had framed when Ants was still home on the farm.
I took in an original painting of cattle that I had commissioned for Anthony’s birthday years ago and a photo of Ming as a baby. Anthony didn’t like the fact that I had brought yet more home things into the nursing lodge and became glum and, yes, we had an argument and I had to close his door so that the staff wouldn’t hear my desperate pleadings to him to please, please, stop ruining all of my visits to him. At the end of that, as I was leaving, he still asked:
Anthony: So when am I coming home?
I cried all the way home, not with grief but with a kind of new rage.
jmgoyder 
Glad to hear you’re adding parts of home life into Anthony’s current permanent home at The Lodge. Sounds like he’s not taking to this idea of permanence at all. Or maybe he just keeps forgetting that the Lodge is his new home.
Whatever the case, I understand your emotions.
Your own patience and acceptance must be wearing a bit thin after this length of time apart from Anthony. I can appreciate how hard it must be to ‘keep on keeping on’. Perhaps another change in routine might help. Is it warm enough for a picnic in the garden outside his room possible?
Is the garden big enough to have a pretend picnic, Anthony in a chair & a couple of friends to vary the conversation? Or would this be too much?
Just trying tto think of ways to ease the difficult routine a bit and add a bit more to your own enjoyment of the visits.
Oh Victoria – you are such a beautiful friend. Yes, the picnic idea is possible and we’ve done this kind of thing before because the staff often take Ants out to that area into the sun anyway. I ended up telling him that I was suffering with the loneliness-for-each-other thing too and that I was also sad and that seemed to be a useful thing to say. I also told him he was selfish and he agreed so it ended up okay but argh! Juliexxx
Sometimes the simple changes to daily routines can be so uplifting, Julie.
As Anthony was a farmer all his life, I think one of the things he must miss the most is being out in the fields and countryside in the fresh air. I know I would.
I find it a constant challenge to amuse even myself (not having a car or being able to travel much).
When I was working still – 25 years ago – my favourite weekend treat was to get in the car and drive up to central Victoria. As soon as I left Melbourne suburbia and had the fields & hills around me, I would be instantly transported and uplifted.
He doesn’t realize how heavy he is to get in and out of a car etc. But going for a drive is my plan for tomorrow.
Gosh, I wish it would get all better — grief anew. It is because you care so much about him that you are suffering–and though it feels bad, it is good. So many things are both good and bad.
Yeah, I’m actually glad we had the argument because he finally he realized how much I was suffering too.
so all is sort of good – and sometimes that is all we can ask for
True!
that is the exact same way Al is. i talk and explain and even ask him if he understands what i said, and then his next sentence is his original one he asked. so nerve wracking. i am sorry, but maybe it is my personality. i have always had this saying for myself which is, i hate dumb people. when Al doesn’t get it or what i say, it sort of goes back to the i hate thing, but i know with Al, it is not dumb people, it is dumb Parkinson’s
Terry, your patience with Al, and with your situation, amazes me. I do not know how you do it! Love Julie
do you want to hear something scary and funny? neither do i most days………..LOL
As hard as it is for Ant to get used to the idea of staying there, in the back of your mind it must be harder to accept hes not coming home… I think this is why you cry all the way home.. the reality of it is, you’re just as heart sore, if not more so, than what he is. It’s tough on those that are left behind, but tougher on those that must leave…
I think I got that through to him yesterday – dunno.
Newfound rage … I can see how this would occur. Rage is actually considered more of an empowering emotion than despair ~ but nevertheless, I wish you were not having to confront any of this 😦 It does seem as though Anthony continues to resist this new state of being …and I can’t blame him … but so difficult for you. Your attempts at making his quarters more homey are wonderful, and I think on some level, Anthony knows this too. Hang in dear Julie…. so hard – and not fair, I know — sending love your way sweet friend xo
Like I said to the Baroness in a previous reply, I am going to prepare a bit of a ready-made speech for tomorrow. I am not going to see him today.
Yes – that sounds like an excellent plan Julie. If you are prepared this way, you will spare yourself emotionally in the moment. You can cue yourself… say -“ok Julie – here it is…” and then go into your thought out response rather than trying to deal with all the feelings that come up while you try to explain and justify to Ants why it’s not going to work. Good luck … fingers crossed this lifts a big burden from you in dealing with all this dear friend. xo
Thanks Robyn – am working on my little speech – still angry with him, how awful is that! Loveya Julie
Yeah I wouldn’t want to argue in public either…I mean I know Ants has his own room but it would still not feel private to me. I like that you have brought him bits and pieces of his life…I don’t like how it ends up breaking your heart when he asks when he will be coming home…
One of his friends said that when he visits Ants, he is quite content, even happy, and he talks positively about the staff and the place and the food and everything. It’s only when I visit that he gets all miserable. This friend even said to me, “He is playing you Julie” which seems a ghastly thing to say bit there is some truth in it – argh.
maybe….or maybe you’re the one person in the world that he can be himself and honest with? Sounds like in previous posts he has tried to put up a good front with others…
Yes, he is always much more ‘normal’ with everyone else.
but I can see how hard all of this would be and how you might want a pleasant visit…
yes – it gets me a bit gggggrrrrrrish!
Sweet friend, I cannot even imagine what this is like as I have said before. Your sharing here what you’re feeling is so important for you and for your Anthony. I don’t know how you could do this without feeling rage quite often and the fact that Anthony bemooans your help is hurtful. I get! I just wonder if he does. Does he know that he is not ever going to be able to live at the farm again? Is it feasible that he knows?
I remember my mom who was in complete denial about her diagnoosis right up until the end. While having to use oxygen she was always telling us. “When I get well…” Oh My God it broke my heart and pissed me off at the same time. I so wanted her to understand but could not bear to be the one to enforce the fact.
Your feelings of rage over the ENTIRE circumstance and fact that this is where Anthony needs to be are all so normal, remember you saying that you are not all amaxing when we try to say how much we admire what you’re going through and how you are coping?
Just the same I admire that you are so in touch with your feelings that you see the rage and allow it. It’s not anything to be ashamed of Jules, it’s damn well what it is and you have my permission to scream, rant, and even break down and cry. Like you need my permission. But my point is sweetie that what you are living allows you to feel and express anything you need and want. and sharing with us is a gift too each of us.
You are paving my road of the future with excelent points and tips, I know it does nothing to change your situation and although as much as I wish I could it’s not enough to just wish. So I pray too.
Please just know that I care very much about how this is affecting you too, you have to know that your family and friends care for you and how this affects you. Please be extra kind to yourself in the next couple of days, ignoring open wounds leads to infections. You my dear do not need an infection right now in your life, so pull the band aides off and let the air dry off your tears. And then do it all over again.
Gentle hugs, ~ Your very own CC
Thanks BB/CC! You are such a gem to write so generously. I am glad this kind of blog entry is somehow helpful to other people because it makes me feel less self-indulgent! I guess every week seems to present a new challenge and I never seem to be quite ready. I need almost to develop a bit of a prepared speech for when Ants asks about coming home. I am working on that now. Thank you my good friend. Love Julie
Excellent idea! Prepare yourself so you are not so blind sided. It’s an emotional impact of great magnitude so having something in your back pocket so to speak to help guide you through the rippled waters is a wonderful thing to do. I think it’s very loving.
And yes you do help me. I am storing away all the things you are going through and how you are handling hem. I know at some point these are going to be pulled out and used at a later date in my life. This I know because Bear is almoost 10 yrs on me. He is almost 67 now so I am as you just said preparing. You have given me this gift of knowing what I must do now, not wait.
We also have a couple here in our home town that we are friends with, dinner companions type things. She is actually a sorrority sister and we have been friends for years. Her beloved was just diagnosed this spring, they were in denial and looking for another answer for a couple of months and so did not tell anyone. But now we know.
I’ve shared with her my friendship with you so Jules you have no idea how reaching your loving posts speak to. Even when you’re feeling weepy or cranky it’s all part of it and it’s good to know.
You are good for me, and my life/ You are a gem of a friend ~ BB
Thank you so much – this is very interesting and so much food for thought (oh no that sounds a bit smammy!) I do wish your friend well and you of course. I love how you call your husband Bear. Sorry this is a bit rushed! Jxx
This journey is so arduous, with a few smitterings of highs, but mostly very difficult lows. I also know that you’re helping so many people who are involved in similar journeys, by sharing your own. Thanks for doing that, Jules.
That’s a great word ‘smitterings’!
i never really know what to say but i want to be saying something.. so i will just say hullo and you are sat between a rock and a hard place so don’t stub your toe or your brain.. there now.. that made no sense!! love love, celi
Ha – good one!
Oh…it would be so gut-wrenching for me to hear a loved one ask when he/she can come home. I would be constantly crying. I’m so sorry.
Every single day – he asks this.
It is heartbreaking when they ask when they are going home, my pop would ask all the time and so did my great aunt at every visit it was when am I going home and it would upset mum a lot she hated having to leave them there, don’t get me wrong the place pop was is a very nice home my greataunt was in a not so great place though but it was the only place we could get her into at the time
That home-coming question is torture.
I can’t in my wildest imagination understand what you’re going through. So a fantastic film a couple of years ago – with Julie Christy, had Alzheimer’s and decided that she would like to move into a home .. and she forgotten more and more who her husband was and fell in love with another patient, while her husband just could watch what happen … and couldn’t reach out to her “Away from her” and that film made such a strong impression on me. Fantastic film, know that Parkinson’s isn’t the same illness but still the anger, frustration and sadness her husband had to live through, watching what his beloved wife went through. Understand that you cry .. but we have the same right to our tears as our laughters.
Thank you, Viveka, for reminding me of that movie – yes, I have seen it. PD is very similar to AD and I need to get back to how we used to laugh – you are great! Juliexx
Yes, laughter helps against everything – but it’s not easy to laugh at all times. I really feel for you and Terry – and the situation you’re both in. Still I think you have made the right choice to with the nursing home, even if it’s tough on your both. Can image it wasn’t an easy decision.
You are a champion, Viveka!
Heartly thanks … for those words.
Do you think Anthony forgets what you’ve told him. Julie, or that he just won’t accept it?
Bit of both I think – dunno!
This comment to yours above. I think we ran out of reply uttons because that comment thread was so long.
You never need to spologize to me for having other things going along side blogging. Just know that. I know how incredibly crazy your life must get at times. As the kids say; no worries.
I love that you love that I call my husband bear. If you saw him you’d understand. He’s huge to me, 6’2″ to my barely 5′. He has a beard that he’s kept for so long our 36 yr old daughter has never seen him without. Our oldest did once when she was just a baby and she would have nothing to do with him for awhile. I think it crushed him.
He is my Bear for so many reason, but mostly because at this time in our lives I am able to lean on him. When I so need someone to lean on. I know that the roles will change one day, I am just now coming to terms with our age difference I think. So many people told us in the beginning when I was still a teenager and he a young man. Everyone told me that one day the age difference was going to make or break us. I so wish I could show those people that it made us, and although there were times when things seemed unbalanced between our age difference we have been able to muster through and beat it.
I’m just now starting to realize the reality of what some meant. I know that we’ll be fine and it won’t be the easiet thing we’ve gone through. This is why your sharing in the way you do, so open and honest, and sometimes even raw emotions is so much a gift to me. In fact I’d even venture to say that you may even have another book in you.
Wishing so much today like many days that I could bring you a bunch of fresh flowers your way. A pot of soup, ar some home baked cookies.This at tmes seems so inadequate.
Sorry for the novel friend. Sometimes you just inspire me to talk ~ BB
OH I can just picture this BEAR of yours! Oh and I love your ‘novels’!
I suppose that each time you bring something from home, he has to admit the possibility that he won’t be returning himself.
Yes that has been the tricky thing about taking home stuff in – very tricky.