Parkinson’s Disease is different for every single person who has it. Its many and varied forms, and its hour-to-hour unpredictability, is maddening for both sufferer and carer.
Last night, at around 6pm, I received a phonecall from a nurse from the nursing lodge where Anthony now lives and she told me he wanted to talk to me. I was a bit alarmed that they had rung me. Once he was on the phone I could hear the dreadful fear of confusion in his voice and I kept reiterating that he was safe and at the lodge. But he kept saying he wasn’t there, he was somewhere else and wanted to come home. Luckily the nurse stuck around and she and I both reassured him.
Tonight I made my usual 7pm phonecall to say goodnight and Anthony was once again disorientated and not sure where he was so I said I would hang up and ring the nurses to tell them he was confused again. Anthony said,, “Jules, don’t tell them I’m crazy!” Anyway, it all worked out with a nurse by his side when I rang him back, but he still didn’t quite know where he was.
My love for him has become like blood; every time he bleeds, so do I. We had such a beautiful, turbulent, fantastic love and now it whimpers or howls – unbearable.
I will go in at my usual time of 11am tomorrow but first I have to swallow this horrible sorrow, put a grin on my face and buy chocolates.
Parkinson’s Disease is different for every single person who has it. Its many and varied forms,and its hour-to-hour unpredictability, is maddening for both sufferer and carer.
jmgoyder 
Julie–so sorry. YOu love continues to shine through the pain.
Every time I think I have it all in hand, I seem to lose all my fingers – argh!
I’m so sorry, I know how unnerving and painful this all is. Not knowing what to expect day to day is the hardest. Flower Child has a disorder that often leaves me feeling like I’m speaking to a child with early stage Alzheimers.
You probably can’t say here but what is Flower Child’s disorder?
The fun (insert bitter laugh here) is that the underlying cause is as yet unnamed. We know the symptoms, know the most likely origins, but there is still more unknown than known in neurology and neuromuscular disorders.
My thoughts and prayers are always with you. I can’t imagine what a rollercoaster ride this is for all 3 of you. xo, Diana
The invention of the rollercoaster has provided us with a brilliant metaphor!
I am also very sorry this is happening to your family.
Hard to stay positive
that is terrible what you had to go through, when Ants is so confused. it is amazing at how this illness is not the same with each person. it would be much easier to compare notes if it was all the same
Sometimes I just feel utterly lost
You and Terry and your loved ones are just having a horrible, horrible time. I’m so sorry.
Terry’s situation is much worse. I rang her last night – it was wonderful!
Oh Julie — this made me so sad. It is a very gigantic challenge you face…. you are doing the very best you can ~ I admire you soooo much. I am saying extra prayers for you today – may things be manageable – peaceful and maybe your deep well of love carry you forward. xo
Your generosity of spirit is awe-inspiring when you are going through so much Robyn. Much love to you – Jxx
😦 no words. two words. this sucks.
perfect words
Two steps forward and one step back. Everytime you think you’ve got it together, something else hits you. I know you have family, but do you have a PD support group? I can’t imagine the strain you are under. My heart aches for you! Stay strong.
I have enough friends and family for support and am not into the support group thing but maybe………
Speechless. ((Hugs))
thx
It’s a terrible disease. Not much consolation to say you’re not alone in being a suffering carer. One day at a time.
one day – thank you
Tough going. It’s hard to read so it must be harder to bear. I hope that writing about it helps a bit.
Yes.
Good.
It sounds like it is such a rough road with so many twists and turns and potholes and only have nice smooth stretchs every now and again, it saddens me to read that you are having it so tough and yes I know Ants has it tough too but since his memory isn’t up to scratch there will be times when he won’t remember all the crap that is happening to him, unlike you, you remember everything bump and rough stretch and when you go to bed at night it will play on your mind far more then it will on his………….so it is your pain that saddens me…………..just a little more then Ants…………
You are such a gem!
Beautiful words. I wrote about you in my blog today. I hope this brings you new readers. Have a great day. Take care of yourself.
I am gonna HPA you!
Oh Jules my heart weeps with yours. You may be on the other side of the world from me but I am with you. I am holding your hand, visualizing your memories and learning along side of you this devastating disease call Parkinson’s. You and Ming are always in my prayers
Thank you so so much – still not sure why your comments are coming up as anonymous.
Oh Jules. I am so sorry. I know your heart must be breaking. I can’t even fathom what that must be like, or why some of us have destinies that lead us down these winding paths where sunshine rarely pokes it’s head out. Be well…XO
Thanks Arnel!
You are amazing, saying so much so clearly must be an enormous help to so many and yet right next to you is that howling wolf of grief.. I am sure you just want to bite your own fingers off .. but you don’t, because you have been able to very strongly hold onto to who you are and not allow this wretched illness to define how you are going to be..
Am I starting to sound like Dr Seuss?. I re read that and now i am deeply afraid i am channeling Sam I Am!
ah well. love, love, celi
Thanks Sam I Am!!!!
I feel your sorrow! It’s so hard when you have to reassure them everything is gonna be ok when it’s not :(.
As you well know.
So sorry Julie… I don’t even have the words… Hugs and healing light sent your way.
Thanks so much!
my father had this disease over two decades ago and none of us understood it–you have made me understand it now, and I wish I had known
hugs to you
It is a very difficult disease to understand – so sorry about your father.
it seems to have so many “personalities” that you have to deal with — seems like a different one almost every day
Julie, I didn’t click the like button today. I couldn’t. I don’t like this pain you are going through. It breaks my heart. Blessings my friend. (((O)))
It’s utterly unbearable watching someone you love suffer so much – it’s just devastating. I really feel for you, Julie xxxxx
on saturday we had ventured out to brunch with our daughter and since we were out decided to go to a rather large warehouse store. as we were shopping my husband had gone to get something so i would be able to conserve energy. while waiting for him i saw a young woman with an older woman. the young woman walked away and the older woman started looking around and saying to passersby “where are we” and sad to say most people just walked on by. i was able to reassure of where she was and more importantly that her daughter was returning. the look in the daughters eyes said so much when she returned.
julie i think of you and the struggle each and every day, it is difficult for him and yet he will not remember these moments the same way you do.
After these episodes, you need some of Ants forgetfulness. Sending Hugs.
My Dad had Alzheimer’s. I am so grateful that we were able to care for him the last 18 months of his life. It is so hard seeing your loved one disorientated and lost. Cyber hugs to you and your Ants!
Thank you and same to you!