One of the worst things about Parkinson’s disease, especially in its final stages, is that no matter how diligent you, and other carers, and the sufferer, are with the timing of the medications (which is vital), what works well one day might not work the next day, or hour, or minute.
When I arranged for Anthony to be taxied to and from a restaurant the other day, in a wheelchair taxi, it was a great success except about an hour too long. He became exhausted.
Today I arranged for Anthony to be taxied to and from the farm but made sure it was less hours than the previous time. So he arrived at 11.30am and he and Ming sat out the front in the sunshine and it was great hearing them chat. Then I served a lunch of scrambled eggs (Anthony’s favourite except for fish mornay!) Then he got too hot in the sun so I got him back into the wheelchair and pushed it into the shade.
By this time (about an hour into the visit) Anthony had become very slumped and silent and our conversation was limited to my chatter with little response; he just wasn’t ‘with it’ and looked awful, you know, really sick. So, I rang the taxi people and asked for the wheelchair taxi to come earlier, then I rang the nursing lodge to tell them and that was fine.
Well, as soon as I had done that, he came good (‘come good’ is an Australianism for rallying I think). He got off the wheelchair and used his walking stick to shuffle around the garden a bit, went to the loo without needing much help and walked outside the front again, sat down and was suddenly in the mood for conversation. By this time it was around 2pm and I was wishing I hadn’t asked the taxi to come early because Ants would have lasted until the original time of 3pm
So when the taxi arrived, Anthony said, “Not already?” and looked so crestfallen that I could hardly bear it and kept saying to him, as I was wheelchairing him to the taxi, “I’m sorry – I’m sorry, you were all slumped – how was I supposed to know you would suddenly come good?”
After Ming I and I waved him off, I cried for my bad timing and Ming said, “When will you learn, Mum? It’s not your fault.”
By now, Ants will be back at the nursing lodge. And, until I get the taxi vouchers next Monday, this ‘genius’ taxi idea has so far cost over $200 and what for? The sadness far exceeded the joy today. Arghh!
Oh yeah, and the stupid geese didn’t do any frolicking while Anthony was here, and I didn’t get the roses pruned and I just tried to ring Ants and his phone is off again. On the other hand, weather-wise, it has been an extraordinarily beautiful sunny day, the phone hasn’t rung (I am not phoney), and Ming just went off to milk the cows happily.
But my main point is that the unpredictability of Parkinson’s disease can do your head in – whether you are the sufferer or the carer – and it is, therefore extremely difficult to ‘go with the flow’. I know I’ve posted the photo below before; this is Anthony nearly two years ago. He doesn’t look like this any more.
jmgoyder 
I felt really sad reading this post, but on the other hand I felt like I really understood what you were saying about unpredictabilty. It’s a horrible disease (& so is Alzheimers and a whole lot of other degenerative diseases).
I do so wish the Government understood that carers, and the chronically ill alike, deserve more support and understanding.
You need all the assistance you can get in terms of research, funding and physical help. You need assistance with suitable taxis and ramps in public buildings, free wheelchairs & more disabled toilets.
They pour so much funding into some diseases like Cancer, and yet minimal funding into some of the lessor known chronic health diseases that don’t have such obvious symptoms (on the surface).
I say I understand the unpredictability because after my lumbar back surgery, if I kept standing and moving I was fine, but if I sat down in a chair for 1-2 hours, I was unable to stand up without using arm rests to push myself up or someone help me. Even when I stood, I was doubled over and couldn’t walk until I had loosened up again. And yet, an hour earlier I was walking around like a normal person.
(By the way, I am far, far better now 4 years later, but still can’t get up easily from kneeling position. And I still can’t put my right leg over my left, or, sit on the ground). I still can’t lift my right leg to put slacks & sock on…….and I hate the zoo public toilets. There are such small cubicles, I can’t twist, turn & open/shut the door easily. When no one is looking, I use the disabled public toilets (even though I’m not ‘disabled’).
Victoria, your perspective is so interesting because you obviously look well and able, so when you aren’t people don’t ‘get it’. You must find this so frustrating in much the same way that I find it incredibly frustrating when people say to me, ‘oh I visited Ants the other day and he was great’, or today (after telling nursing lodge Ants would be earlier than 3pm), when the nurse said, ‘oh, he’s been fine lately!’ The implications behind these remarks are so hurtful because you end up feeling like a dramaqueen or a liar – argh. Jxx
I try not to, but I end up getting very angry when people look and/or say comments that imply a person with chronic illness is lying, or as you say, a dramaqueen.
It must drive you up the wall when people say Ants is ‘Just Fine’.
I hought a book some years ago when I was first diagnosed with Fibromyalgia, called Just Fine – unmasking, concealed chronic illness and pain by Carol Sveilich. It’s an invaluable support for those with an ICI (Invisible Chronic Illness).
Maybe your friends, family and support network should read it.
I don’t know hardly anything about Parkinson’s but your blog has certainly been informative and revealing, and I feel so much more understanding of it’s difficulties and unpredictable nature on your marriage and life.
Me too, Victoria! I feel like I understand chronic illness much better than I ever did before – and the only reason for this is your blog and a couple of other blogs that yours led me too. The diseases you suffer are so real and so painful and so awful and yet, because you carry on, many people wouldn’t even know. You are such an heroic person in that way; your blogs are funny, interesting, informative, delightful and there is never a hint at how much you are suffering physically. I admire you so much. Juliexxx
Oh I forgot to ask about the “I am fine” book – it sounds wonderful!
ICI = hell.
I’ve always thought that the saying about we are never given more than we can handle is a bunch of bull. We handle what we are given because there is no other option. Its wonderful that you are able to bring him home on occasion, have some good moments, and are concerned about getting him back before it becomes too much for him.
Oh thank you! I am so glad you said that we are never given more than we can handle is a bunch of bull because I so agree – not for me so much but for so many others. I have just subscribed to your blog because I love granola!
Ming is right.
I just told him and he is now preening his arrogant wings – ha!
🙂
Yes! I am a bit bereft tonight so thanks Tilly.
Sorry Ants ended up leaving early whilst feeling better. I can see how trying to predict how things will go can make you crazy!
I have to somehow stop trying to predict!
I too think Ming a wise one Jules xx
Still tears wash away stresses too!
take care u guys, 🙂 🙂 🙂
u2!
most of us are not psychic – you son is wise though and I hope you take comfort from his words
you are just trying your best and that is all you can do –
Thanks and you are right.
i don’t know if u can understand this, but probably can, this is the same way it is here at our house, one moment, one hour is good then bad, and this is the big debate that goes on in my head constantly, one moment i can continue this and the next i am ready to place him. it is easy to say place, as you, i am sure have heard from others, but when u r having good days, then all seems better
Oh I know, I know – I know!
John’s mom was in a nursing center for twelve years, and I picked her up and took her out every Thursday of those years, and you can never get it right all the time. The odds are stacked against you. But she felt loved and cared for, and so does Anthony. Plus, your MIng is one cool kid.
Thanks Judith – I feel reassured!
I feel for you. It must be incredibly difficult to “go with the flow” when it changes moment to moment. It’s especially hard if you are a “planner” naturally. It’s too bad how much money goes into curing a disease, but none on beter drugs and care of those with the disease, and providing assistance to caregivers like you. I understand how people can “hate” a disease.
You’re doing a tough thing with class, dignity ,and humor, and you can still see the beauty of a day. I send positive energy your way hoping you’ll become more comfortable living in a moment by moment world.
What a lovely person you are – thank you!
It isn’t your fault.. everything you are doing is for the good of your man.. and the decisions you’re making are the same… It is far easier for me to sit this side of the ocean and say don’t feel bad… because that’s bull sh.. you will, but you didn’t make that decision for you but for the good of Ant, and it was a good call I would have done the same,,,
When my Dad had his stroke we had to put him in a home where he lay till he passed on, we could have kept him at home, the realities of it was my mother could not of coped and we could not afford a 24 hour nursing at home… many a time he asked to just go home to see his dogs.. I would carry him to the car and take him home for an hour… he would enjoy his dogs for 15 min or so then would become all retro and start talking about the second world war, but not as in history, but as in the present, I would take him back to the home feeling like a big sh.. for doing it.. I had no option as we could not handle him at home, he was better off where he was… We make decisions for the good of a loved one, not for ourselves, but for them…
I can say don’t feel bad, but you will, let me rather say, I know how you feel and be at peace with yourself you made a decision for Ant not yourself…
God be with you Dear and you will be in my prayers… Cheer up if you can, it was a good decision…
Your story about your dad is heartbreaking. Thank you for your understanding and amazing reassurance.
Being the control freak that I am, this would be very hard for me, too. I totally get why it’s so upsetting for you. Even though Ming is, of course, right.
Oh!
the unpredictability is by far the most difficult aspect of life in general but with both the afflicted and the loved ones it is beyond maddening. we never know if one moment to the next is going to be good or less than hoped for. even our recent anniversary trip was at times difficult due to my health and not being able to make any real plans. there are times when being spontaneous is not possible and breaking engagements becomes beyond embarrassing.
your frustration is palpable and reaches off the page to tug at my heart.
Your comment makes me realize how hard this is for the person with the disease – especially for you because you are so aware of what is happening. I feel so much for you.
Those geese need to get their act together 🙂 It sounds like Ming spoke the truth. We hope your sadness subsides a bit.
Bella and DiDi
Thanks you sweet pooches!
I agree with Ming, don’t be sad for this dear Julie, Love, nia
Ok
“When will you learn, Mum? It’s not your fault.” – wise, wise Ming. But rationality doesn’t always cut it when our hearts are breaking 😦
Male pragmatism?
Gosh – I so know about this unpredictability thing. Very hard for people outside your immediate circle to comprehend. I go through this too – even with my closest loved ones it’s a problem. I can’t count on much.. not even a good hour these days. It’s basically taking 1 minute at a time. Don’t be hard on yourself Julie – you are doing your best – that is good enough – Ming is so right … Sending big hugs and love …xooxx
Sounds like you are having a terrible time at the moment Robyn – one minute at a time – wonderful advice. Love Juliexxxx
I thought I’d responded but don’t see it here. Sorry if its a duplicate. I hope you’re better/ You sure can’t blame yourself for whether the meds are on or off. I think you’re a hero. Be gentle with yourself.
Does it drive you mad too?
For sure, it does. I have some days that are 100% on, what I call my “red wine & chocolate” days, and then others when I ache more or function lesswhen I just surrender and go to bed early with pain meds and an ice bag or heating pad (I have arthritis in my knee that seems to flair more on those days, too. I hope this is a wine & chocolate day – taking my college student shopping before she goes back.- crowds and lines are NOT my thing anymore.
I have so much admiration for you!
I’m only 3 years into my diagnosis; I hear these are the easier years. Believe me, I already can see what heroes you caregivers are, who stand and fight for someone you love.
You are the hero!
Your son really gets it, you should be very proud of him (and listen to him!).
Yes he refuses to ‘do’ guilt and I am very proud of that because I do it too much!
One of the hardest times in life…but I promise…you’ll make it through. Yes, moment-by-moment. My gosh, how I love my sons! And you Ming. Sending you some big Texas love…
Thank you so much, Wisdom – sending Aussie love back!
Ming is right it is not your fault these things happen if you hadn’t arranged for the taxi to come early he wouldn’t have come good and you would be feeling bad about that so just focus on the good points of the visit and not dwell on the bad
Okay – will do – thank you so much Joanne!
Parkinson’s takes it’s own course and doesn’t really care about the victim or the the caretakers. You are hard on yourself (which appears to be what gets you through the pain) and I am glad that at the end of the post you were able to see the sunshine, at least for a moment. There is no words for the pain of slowly losing the ones we love to this horrible, body and mind stealing disease. Crying is good. And your son is good to remind you that you are not to blame for anything, especially an early taxi. I love the picture your posted of the 3 of you in better days – it is ok to mourn the change from what once was to what is. It is obvious you all enjoyed great love on that day, that is a gift, remember and take solace in the memory. I do not see my Dad as the withered 90 lb Parkinson’s victim that could not move in the end, I see him as the robust man who carried me on his shoulders and loved me with deep hugs and warm embraces. ❤ – Lorian of DogDaz
Thanks so much for this DD! So glad and I feel privileged to know about your dad. You obviously know what I am on about Lorian – thanks so much again.
Pleasure is mine. We must all stick together. There are those that can sympathize (they feel sad for you but can not relate) and those that can empathize (they share your feelings because they have felt them too). Both are are needed. You are doing great.
You are great!
My heart and soul are crying for all three of you. Jules Ming is so much an emotional genius. He’s right, when will you learn PD is so not your fault? Nor are the symptoms.What you can do is not have any expectations for the day except getting to your beloved Ants, or him to you at the farm. At the end of the day is not having hom next to you all you are really looking for?
My experience with chronic illness that there is no cure for is that there is no such thing as go with the flow. I myself, alough not nearly the boat Ants is in, and would never mean to compare illnesses, yet there is this point I have learned. There is nothing too much that you can count on for sure, so lowering expecations can help.
Things changing by the minute, hour and weeks are what keeps us on our toes.
My gentle hug my friend, you are doing so good even though you’re so not feeling that today. Just so you know. ~ BB
On our toes all right! You are definitely a true Baroness – so many thanks for these words of yours!
Great post. Very helpful. Thanks for the info.
Living in the moment when each one can be so wildly different must be hell. As others have said, be kind to yourself. I’m sure Anthony was just glad to spend time with you and Ming.
It’s strange – when Ants sees me it seems to make him sad whereas Ming has more of a cheerful effect.
A wonderful photo of Antony – he has a cheeky smile and his eye are smiling … so even if it was only a short conversation and a photo that came out of those $200, he got a good snooze on this porch too. – sadness … and distress mess us up.
I am learning to accept the happy and sad together.
Good for you!!!