Yesterday, Ming went to see Anthony at the nursing home at around noon because, even though I didn’t see Ants on the weekend (because I was having a bit of a break with my friends at a nearby chalet), on Monday my stupid hands had become a bit infected and very sore and I felt unable to make the journey into town. But by 4pm I couldn’t stand not seeing Ants so I drove into the nursing home and arrived in Anthony’s room at 5pm.
Ming had already told him, earlier in the day, that I wouldn’t be in, so he was surprised and absolutely overjoyed. “My beautiful, beautiful girl,” he kept repeating. His dinner arrived and we shared a beer and I helped him with food, phone and television and then I had to go home again. I was probably in there a bit over an hour and, by the time I left, Ants was a bit confused as he always is in the evenings now. But he was happy! And he didn’t mind that I was going home at all. For me, the relief that he could say goodbye to me happily was so wonderful that I drove home on a bit of a high.
But every day is different of course. So today, when Ming and I visited for a couple of hours in the early afternoon, Anthony became so sad when we had to go (including begging us to take him with us) that it broke my heart all over again because he even articulated it: “When you both leave, I get so upset.”
Ming is better at handling this than I am. “Dad – pull yourself together! We’ll see you tomorrow!” For me it is much more difficult to extricate myself from Anthony’s heartbreak so I tend to prolong goodbyes with so many kisses and hugs that Ming nearly vomits!
I guess, because I don’t have a routine of what time I visit Ants (except that it is nearly every day), and the fact that I am not bringing him home so much, because he is too heavy now and quite often unable to move or walk without help, every single day has become an unpredictable journey of fear. The other wives of the other men Anthony’s age all have a routine; they visit their husbands at the same time every day, but these wives are in their 70s or 80s and live nearby.
This is not me complaining or asking for advice; it’s more of an attempt to give some insight into the unpredictable nature of PDD (Parkinson’s Disease Dementia) and how one day, no matter what time of day, Ants might say, “Okay, see you tomorrow, Jules” and the next day it might be “Please don’t leave me, Jules!” I can never know what to expect in any way at all – again, no matter what time of day, although evenings are worse – lucidity, confusion, joy, fear, confusion, love, hope, conversation, confusion, helplessness, uncertainty, disorientation, confusion, misery ….
To grasp my husband’s big, old hands with my younger infected hands today was very painful because he had a grip I haven’t felt for a long time – he held on tightly until I said “You’re hurting my hands, Ants!” and he immediately released them. It was worth it though, because he lost his grip a couple of years ago (PD).
On a lighter note, I am having a break from cooking tea for Ming because, for the first time ever, he is doing it all by himself – yay!!!!!!!!!!!!!!
And the ducklings took a break from Godfrey (when he wasn’t looking!) to take bread out of my hands.
It is quite possible, of course, that, due to recent circumstances, I have either had, or am having, a nervous breakdown. That would be a very convenient excuse for not answering the phone, not opening a month’s worth of mail, not keeping up with blogs, and blogging in a way that is almost ridiculously high and low – sorry!
Oh, Home and Away is on in 5 minutes – now that is a break from reality – haha!
jmgoyder 
your journey is a tough one–I read it and you because you are so realistic and even if you do not know it, you are helping anyone who reads this by your honesty and compassion–
Thank you for this generous comment – I am struggling at the moment.
Every time you write about Anthony calling you his “beautiful, beautiful girl” I melt a little bit.
Me too!
No, you’re not having a nervous breakdown, Julie.
You’re just being human. Generally, we humans like to have some degree of order, predictability or lifestyle. Most of us like to at least work 5 days and have 2 days off (with no routine). Your life is full-on 7 days a week.
With PD, Alzheimers, Dementia, or any other condition which has intermittent Highs & Lows, Insight or Mystery, Ability or Debility, life remains a constant battle. You never know what you’ll encounter any minute/hour/day/week/month/year.
Just when you think you’ve got everything in control and in manageable ‘bites’, everything changes completely again.
I certainly couldn’t cope if I were in your position.
I’ve found the only way I can cope with my own life is to be totally self-centred and ignore everything that’s even the slightest bit difficult or requires extended mental or physical effort.
Blogging is the least of your worries. If it helps, make it once a week, once a month OR, give it up. If you don’t want to give up blogging, why not start a post, write a sentence or two and then save it. Only upload a post when you got time, or need some online feedback & conversation from your blogging friends.
Methinks you’re under enormous strain – mental, emotional and physical. You are totally stressed out and need to give yourself some more space. If you can’t mentally deal with it, make yourself a list. The Must-Do’s and the, I Want-To-Do’s.
When you’ve finished the list – cross half of it off.
Vicki – you are (as Ming would put it) – an absolute champion! Thank you for your wisdom and encouragement and, mostly, for your first sentence! Jxxx
You are being very brave and you are such an inspiration.
Thanks Colline – it seems ridiculous that I am so traumatized by my hand problem but I am! Jxxx
Sending you lots of prayers to get you through the difficult days and the strength to endure.
BE ENCOURAGED! BE BLESSED!
Thank you Francine – you continue to be an inspiration to so many of us! Jxx
life is a series of ups and downs though it sounds like you are on a roller coaster and that is quite difficult. hugs )
Yes – am quite dizzy at the moment – thank you!
Yep! Not opening the mail, not answering the phone…etc etc.! Who wants to talk to people and have to try and concentrate or make ‘nice’… Darn it all I just want to do what I want (which is nothing of course)….. It is what it is… for now…. a break from routine etc. but I hope it doesn’t go on tooooo long. Thinking of you .. Take care Diane
I so appreciate your friendship, Diane!
I couldn’t help but read Vicki’s comment… she has hit the nail on the head, the unknown of what will happen next must be debilitating, how you cope with it all I really don’t know… shit if it helps go off your rocker for a short while, go stand outside and swear at the stars, kick a brick (no don’t do that it will hurt) scream at the top of you lungs, just release the pressure that you are under… go out with the girls and forget everything, have a few too many beers, (but don’t drive)… shit stay in you jaamies all day and watch TV… buy a punching bag and kick the shit out of it… just release a bit of the pent up pressure… and then breathe deeply and cry… then go to my blog for a laugh… just let me know when you’re coming… Sterkte Julie Sterkte…
Yes – shit versus sterkte – getting there bulldog!
Nervous breakdown? Doubt it – sounds too sane to me. To yell, not open the mail, shout at the night, hide for a spell? All sounds perfect. And reasonable. And necessary.
Thanks for this reassurance, Mimi – hiding is a good idea (just for the moment).
You don’t have to qualify it Jules – you strike me as someone who would only hide for as long as she needed to re-group. 😉
ok
Stopping by to leave a hug, and also to say that I have had the same kind of eczema as you before. Fortunately it’s staying away at the moment, but I know exactly what you mean about the blisters and the itchiness – that’s enough in itself to drive you mad, without anything else. x
How did you get rid of it, Suzy? It is driving me mad despite antibiotic and steroid cream – my hands are bleeding and peeling now – ghastly!
I’m sorry to say that I think it was stress related 😦 Things are a lot calmer in my life now and it hasn’t come back for a while. I used to get it mostly in winter and my hands would get horribly dry as well. I used a mild steroid cream which helped a bit, and I would put lots of moisturiser on it (a plain type, not fragranced). You mentioned getting it on your feet as well now in your other post – I had it on my feet at one point – that seemed to be a reaction to some new sandals I had. Maybe you could have a think if you have changed anything recently like what you wash your clothes in, or shower gel or something like that – it’s possible that something is aggravating it. Hope it improves, lots of sympathy x
Thanks Suzy – I’ve narrowed the cause down to perspiration and stress (alas!) It is finally getting a bit cooler down here and I’m onto the steroids so should clear up soon I hope. Thanks for your understanding and sympathy – feeling very sorry for myself. Jxxx
I hope you read your comments on this one Jules. You may as well give up trying to apologize for your highs and lows and hits and misses as far as blogging or reading blogs goes. There are only people that love you here, and we will hear NONE of that. Vicki and Bulldog are right…good advice any way you look at it. You cannot compare yourself or your situation with anyone else’s either as none of them are walking in your shoes (the wives/husbands with regular schedules). On an everyday basis, you deal with (and yes, you are dealing) more than most people deal with in a lifetime. Stop beating yourself up, start being a bit selfish if that’s what it takes to keep your sanity, pamper yourself in whatever way makes you happy, be it a dust bath or a bubble one. Since Ming has proven he can cook his own tea…take it a step further and allow him to do it more often and for the both of you. If writing helps you dispel some of the shadows in the dark, then write whatever and whenever you feel you can/must…but post or not is up to you. Your words help so many, but at the end of the day, it is what is best for you that matters….always here. xoxo
Ah, Rhonda, what the hell would I do without you? Oh yeah I rather like you too – hahaha! Jxxxx
You old softie you…er…you young softie you. 😉
You said ‘old’! Okay I am gonna getcha back for that!
haha…I corrected it though didn’t I?
Haha – yes!
Home and Away! Seriously Julie it’s still on? LOL 🙂 I used to watch that in Scotland.
Very much still happening – getting very interesting lol!
Hugs. Sometimes it helps even if cyber-delivered.
Thanks Renee!
I agree with Vicki and bulldog, they gave good advice my friend. You are under immense stress and strain and the only way to get a bit of relief is to blow off the steam. Do something for you, you deserve it and in the long run will help you to be a better you. Love and hugs my dear one.
You continue to amaze me – thank you so much for your generous comment.How you can reach out to me, when you are suffering so much worse, is gobsmacking (sorry – I love that word!) I salute you over and over – Jxxx
Keeping you all in my thoughts, Julie. Hugs to you.
Not a good week – thank you!
HUGS to you my beautiful friend!
Diana xo
And YOU!
I worry about your hands Jules, you must be in such a state of constant uncomfortable itching 😦 I can only think of two remedies; Oatmeal and Calendula, they both have soothing properties and if you can find lotions with those two in them that can help. Listen to all of your friends, we all love you. 🙂 I am impressed with Ming, cooking his own tea, that is wonderful 😀
I will try those suggestions toomorrow, Laurie – thx so much!
xoxo
A nervous breakdown might well be permitted (or indeed, compulsory) under the circumstances. No excuses required from you by your legion of readers.
Legion? ha.
I think the ‘no-routine’ is good because then if something crops up unexpectedly, Ants is not expecting you at the same time everyday and will not be upset if you are not there.
As for your coping skills – you are doing SO well.
It has been one thing after another the past few years and especially the past six months or so, and it is amazing that you are still standing up.
Hugs to you Julie. You are an inspiration.
Takes one to know one!
🙂
I agree with everyone’s comments. …As for the hands, you have probably been through every possible scenario and I have not read back far enough to see, but I wonder if it might at all be food-related? The reason why I am saying this is because years ago out of the blue I developed terrible eczema and suffered for many months if not a year before I realized that I was eating cold cereal every morning after skipping breakfast virtually my entire adult life. I substituted oatmeal (after determining I had no wheat or milk allergies) and have been fine ever since. I think it may have been related to corn syrup solids so I avoid that additive. Just a thought – if you could narrow it down to a suspect substance. Hate to have you suffering like that, I know how it feels, like you want to crawl out of your skin!
I don’t think it’s food – pretty sure now it began with excessive perspiration – a bit better today. Thanks for the suggestions, Lisa.
Just trying to help; like I say it took me maybe half a year before I realized what I was doing differently. I hope it (and the horrible heatwave) are over soon!
Hugs to you. ❤
Thanks Paulette xx
Sorry to hear about your hands hope they are feeling better today, it does suck when Anthony is clingy and doesn’t want you to leave
He’s not usually clingy but when he is it’s unbearable.
I am glad you were able to get a break. You deserve it! hugs
Your turn soon!
Julie, I’m with Tootlepedal on this one. Who wouldn’t be in a state under your circumstances? Try not to be so hard on yourself. We love you regardless, and only want the best for you.
So wishing you weren’t so far away. (((O)))
Thanks Lynda – very reassured now!
Of course you feel on the verge of a breakdown. It’s a sign that you need to do more to take care of Jules! Don’t wait for the total breakdown to get more support. You are dealing with an awful lot between Ants, your hands, and Ming it’s a wonder you haven’t already broken down. But not you. You keep on going, tough wife, tough mother, tough woman. Holding your world upon your shoulders. I think of you often and all the support you provided to me when I was desolate and lost and wish I could do more to buoy you up. Know that we are here for you and you can vent and complain and reminisce all you want. I send you kind thoughts from far away.
You are so right about not waiting for the total breakdown – pulling myself together again now xxx
Don’t pull yourself together–lean on your family, tell Ming and Mom how much help you could use. They’d probably love to help, but don’t want to interfere.
Dear Julie,
As someone who has personally been through and survived some awfully traumatizing griefs, I assure you you’re not having a nervous breakdown. You’re way too coherent and dependable. A nervous breakdown is when you stay in bed all day eating crayola crayons. A high level of emotion is completely normal when dealing with everything you’re dealing with.
And thanks for having the courage to share your story. I hope you’ll be able to put it into a book someday, to encourage others with your example–you’re funny, you’re honest, you’re decent and compassionate (and you write well!)
Sending good wishes and encouragement your way. Be kind to yourself.
Okay I’m off now to buy some crayola crayons (kidding!) Thanks for this Tracy xx
Julie, you are one of the strongest women I ever met – and I can’t even image what goes through your heart and mind every day .. and how difficult it must be to see your loved one .. being at times so far away from you in his present.
You’re the full package of a fantastic human. *smile
You are the super package then Viveka!!!
Wow, super package!!! I want to give you a big hug now.
it is so easy to give advise and tell another to cheer up or just some other babble. i will say that it breaks my heart to hear of your emotional roller coaster but then you make that last comment about the comedy you are going to watch. those can be real sanity savers:)