wings and things

One hour

on January 9, 2014

It is 8.30pm and I haven’t seen Anthony today because Ming and I have been so busy cleaning up and organizing things for his 20th birthday party on the weekend. With at least 70 people expected, I am, to say the least, a tad nervous, but they are all wonderful kids, and a few of the parents are coming too in order to help keep things on an even keel!

So it is one of the rare days I haven’t seen Anthony. I warned him of this yesterday and he was okay about it and I tried to ring him a few times today but then gave up. He has definitely forgotten how to answer his phone now and I am becoming as frustrated as the many friends and relatives who keep trying to ring him.

When the nurse rang me half an hour ago, I was shocked to hear Anthony yelling ‘you bitch’ over and over in the background and when the nurse got me on the phone to him, he yelled at me too. Ming tried to talk him through taking the sedative (only needed occasionally) to no avail, and the nurse said she would ring me later. In the background I could hear Anthony yelling “get away from me, you bitch” and “Jules! Help me!” and to Ming, “I’m being tied up, Ming!” and “You’re like the rest of them, Jules, you bitch” and “I don’t trust you, come and get me right now, Jules!”

And this went on and on over several phone-calls back and forth from staff to me. This kind of episode doesn’t happen often – maybe once a month – so last time I took Ants to our doctor, I asked for something to calm him and he prescribed it. Tonight I said to the nurse-in-charge who first rang me that there was an emergency drug for this but, during a later phonecall, I could hear Anthony yelling “No!” and the nurse told me he wouldn’t take it or go to bed.

Sobbing with anxiety, I ended up yelling at Ants on the phone to pull himself together, take the pill, go to bed, stop yelling at the nurses, and that I would see him first thing in the morning. When he didn’t calm down, I screamed at him over the phone: “Stop it, Anthony, stop it! This is not you – it is the stupid disease – I will see you TOMORROW!”

I think he finally accepted this and the nursing staff said he was calming down and they would only ring me back if things escalated again.

And tomorrow? He won’t even remember. So was/is this a psychotic episode? Hallucinations? If so, what triggered this – not seeing me today?

But he sounded so terrified, hence his uncharacteristically abusive language. Five phone-calls, five minutes x five, and five moments when I decided to stop crying and to start yelling at him.

Will he be asleep by now? I don’t know, but I am so tired and defeated and shocked now that I’ve decided not to care about it until tomorrow. Otherwise I will go mad.

It is 9.30pm.

55 responses to “One hour

  1. (((hugs))) I have no words to comfort you other than my deep admiration for you

  2. Ann Koplow says:

    I am so sorry you’re going through all that now. All the best to you.

  3. {{{Oh, Julie.}}} What a nightmare.

  4. Lee says:

    Try to get some alone time and just relax. Do not forget about your own mental health.

  5. lensgirl53 says:

    Oh precious, precious Jules…I am so sorry that you have to endure the slow descent of your love’s disease. It is maddening for anyone to see the drastic changes of behavior that causes such distress for both you and Anthony. You have so much to deal with right now. I just pray for peace in your heart and mind, that your days will flow smoothly, especially for Ming’s party. You can’t be at both places at once…the path is not easy. Hold tight…you can do it!!! Bless you and your wonderful family. xo dale

    • jmgoyder says:

      Thanks Dale – Ming and I are going in to see Ants this afternoon and I am going to get Ming to talk Ants through things (he seems to have more impact on Ants due his loud voice ha!) I am a bit nervous about the party but we had his 18th here two years ago with no trouble. Pizzas ordered and picking up chairs today – trying to get excited now! Love you for commenting like this. Juliexxx

  6. elizabeth says:

    Julie, you need to take care of yourself too and that means taking the time you need from Ants. It’s heartbreaking because you (we all) feel so bad when we can’t give them what they want or maybe even need. But if you never say no it won’t be long before you are totally worn-out. Take heart my friend, Ants would understand and I bet even encourage you to take the rest-time you need when he gets out of control like that. As you said, that is not him. It is the horrible disease. (((Hugs)))

    • jmgoyder says:

      I am wondering now if maybe I am seeing him too often, and taking him out too much? One of the nurses implied as much the other week – she said he is sometimes very difficult to handle after I bring him back. It’s almost as if the more I see him the less able to adjust he is – not sure!

      • elizabeth says:

        Such difficult decisions Julie. You want to do the right thing for everyone and that’s never easy. God grant you the wisdom you need to know what to do. ((hugs))

  7. mimijk says:

    You are right Jules – this is the disease, this is the disease, this is the disease…And he will not remember tomorrow and you will feel it in your bones as a chill that never leaves. Ming should have a fabulous party, you should feel the joy warm your heart and through it all I send much love.

  8. Oh sweetie, I hope that today you are feeling better. You are so right, it is a STUPID disease. I wish that there was a way to vent all of your frustrations and anger at it without Anthony being in the crossfire. My heart hurts for you both, my goodness but you are so strong. I am sending you big hugs. xooooox. I think that it is a blessing if Anthony doesn’t remember because I am sure that e would feel awful if he realized what he put you through, the poor lamb.

    • jmgoyder says:

      I’m beginning to understand now that Ants has no self-awareness anymore so he has no idea how what he is suffering impacts on us. Day by day I guess. Thanks so much Laurie.

  9. I do hope you can enjoy the evening…. When this happens of course it knocks the wind out of you… but you did what you had to do in the moment…. take care… Diane xo

  10. bulldog says:

    What can one say to aid you Jules… not much except there is a good word in Afrikaans “sterkte” which roughly means strength, but has more meaning than that…

  11. Judy says:

    Dearest Julie,
    I suffered so when my mother had dementia. She was my best friend. I remember one thing that helped me was to see her as two different people. I could hear my “healthy mom” speaking to me when I was in deep despair. I wrote a poem and I want to share it with you. I’ve revised it a little to fit your situation. And I share a link to my story where I wrote it below. Hang in there.
    Love, Judy

    Copyright 2011 by Judy Unger

    You can never lose my love
    You are my shining star
    From the time I met you
    I have loved you completely
    The last thing I want is for you to be sad
    Your happiness is something I want most for you
    Your joy wraps around my soul
    Fighting to stay alive is worth it
    just to see your smile
    I am not who I was and I am sorry
    I didn’t plan for this to happen
    Even when I’m scared and confused
    You must know how much I love you
    I wish you didn’t have to see me this way
    I have so many wishes
    But wanting you to remain happy
    is the wish I want most
    Please don’t cry or be sad
    You are so strong, so beautiful, so blessed
    How fortunate I was to have you as my wife
    I will be your shining star
    to always remind you from above
    You can never lose my love


    • jmgoyder says:

      What an amazing friend you are, Judy – thank you so much for this. It is so beautiful! Juliexxx

      • Judy says:

        Well, you are an amazing friend – as well. Here’s another blessing. My sharing that poem with you I became inspired to write a new song using that as a basis for my lyrics. So in helping you, I achieved inspiration to help myself! Love is universal and it does help to project love that is missing through death, absence or illness. Have a wonderful time at Ming’s 20th birthday party.

      • jmgoyder says:

        So happy for you my inspired friend!

  12. I hope you slept. I don’t even know what to say to “help”. As I read this I had my hand on my chest, as if my own heart were palpitating. This is truly a love story Julie. So much love. So much pain. So beautiful. You all are.

  13. Trisha says:

    How heartbreaking. I hope today (or would it be tomorrow now for you?) is better and Anthony is calmer so you can focus on the upcoming birthday party. Hugs to you, my friend.

  14. Dale said everything I was thinking…hugs, dear Julie. xxx

  15. dogdaz says:

    There is no way to ever know what cause these things, but they are never easy to endure. You are doing the right things and need to keep going with your’s and Ming’s life. Aware Anthony knows that. Sorry for your pain. Hope the party goes well.

  16. Terry says:

    I will say this about PD that I learned in my 23 years of experience. PD patients do not do well at all with a routine change of any kind. Moving furniture on them, you seeing him daily at about the same time, any kind of change will cause this behavior. PD patients are scared to death. They don’t know why they can not understand or remember. They rely heavily on routine. I hope this helps you. This is probably the most important piece of information I can give you about the ugly disease. Hugs my friend

  17. Anonymous says:

    “Cast all your cares on Him, for He careth for you.”

  18. Hopefully, tomorrow will bring a better day. Hugs.

  19. Vicki (from Victoria A Photography) says:

    I’m so sorry to hear about what you went through last night, Julie. It must be very distressing for you (as well as Anthony & the Nurses).

    You know it’s this horrible disease and not your Anthony doing the yelling, but I guess that’s no help.

    The only thing I can suggest you do to deal with the emotional upheaval is to get a bundle of newspapers tied up with string/rope and a suitable ‘bat’ (broom handle?) and belt the bundle of paper until you’ve got every bit of strong emotion released. Try not to cry. Just belt the hell out of the pile of newspaper. (yes, it worked for someone I know).

    Pretend the pile of paper is the disease.

    I do so hope you are feeling a little better this morning and you’re able to visit Anthony with your usual kindness and compassion. And visit the nurses who had to deal with the incident too.
    They must be very distressed (despite having to deal with this type of episode many times before with many patients. Nursing training covers this type of thing, but that doesn’t mean to say it isn’t scary and distressing at the time it happens).

    I hope Anthony doesn’t remember what he did, as he would he both embarrassed and distressed.

    …..and I hope Ming has a wonderful birthday and friends and family have a great time.

    Love & big hugs

  20. ksbeth says:

    i’m so sorry, i know this is very hard for the family. i think i told you i went through this with my mother. there were times they called to tell me she had taken her roommates hostage, had kicked someone, etc. when i would visit they all showed me how much they loved her, as she was usually so sweet to them. it’s such challenging roller coaster. they eventually helped with some meds that helped with her agitation and paranoia, but it was always a moving target and always good days and bad days. hugs )

  21. artfulanxiety says:

    Shit. Excuse my language. That’s just… well I can’t compare it to anything, and I couldn’t imagine anyone I love with my whole heart being that way… it must just be so demoralising.
    That is one thing I’ve learned from anxiety/crisis is when it’s your moment to take control you always can. I’m glad he simmered down, not just for his side of the fence, but for you.

  22. tersiaburger says:

    my precious friend how I wish I could make your life better. I wish I could wave a wand and Ants would just be an old man but without Parkinsons and Ming could be a young man with a healthy spine and you could be a carefree wife and mother. But we know I can’t. Please know that I think of you every single day of my life. You are in my heart. I care so much for you. Wish I could do more. I feel so darn helpless!!

    • jmgoyder says:

      I feel exactly the same about you, Tersia, and Vic’s image is imprinted into my brain because I often ‘see’ her face when I least expect it, as if she is my friend. Hope this makes sense and doesn’t offend. Your family has touched mine in a very beautiful way.

  23. you are right …. it is the disease.
    you are courageous and you will survive this

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