wings and things

Remorseless disease

on June 29, 2012

This was yesterday….

Ming and I are in the nursing lodge visiting Anthony who is wearing his shark eyes – unblinking – and the lack of expression on his face (which is a Parkinson’s disease symptom) makes him look angry. He can’t swallow properly anymore, so he has a constant drooling problem (another Parkinson’s symptom). Then he wants to go to the loo and I try to get him up off the chair and don’t have the strength without Ming’s help. Then, once standing, Anthony freezes and can’t walk (another Parkinson’s symptom).

I try my old method of saying, “1,2,3” and stepping my own feet just ahead of his, but he doesn’t move. Ming and I half carry, half push him to the loo and then Ming says we should get a nurse, but Anthony says no, so Ming withdraws from the situation and I try to get Anthony into the bathroom but I can’t without kind of shoving him and pulling him and getting teary and angry. “Please, Anthony, it’s just a few steps – please walk!” I shout/whisper. In the background Ming yells, “Get a bloody nurse, Mum!”

I leave Anthony clinging to the toilet rail attempting to wee and go back into the room where Ming sits on Anthony’s bed, his face furious. “You are so weak – get a nurse!”

“He doesn’t want a nurse; he wants me,” I hiss, furiously. “And I am not weak, I am strong! Just go away.” My anger is undirected; I can’t decide who, or what, I am angry with most.

I go back to the bathroom, attend to Anthony and try, with great difficulty to bring him back into his room. It takes 10 minutes to get back to his chair and, when he is seated, he asks for his hanky for the dribble and I pick it up and give it to him. I flinch a little and Anthony says, “It’s just saliva; it won’t kill you.” By now his shark eyes have gone from angry to sad and I feel terrible for having snapped at him.

“When am I coming home to the farm?” he asks me and I say on the weekend.

“Am I staying the night?” he asks, and I begin to answer but Ming interjects with, “Dad, you can’t come home for the night – get it into your skull!”

We all sit for awhile in the room with Anthony sad, me guilty and Ming angry, and then we leave and I cry all the way home once again because of how much I may have hurt Anthony with my impatience. And I cry about my dread of the weekend, bringing him home.

83 responses to “Remorseless disease

  1. janechese says:

    it is horrible and hard on all of you -fitting title Hugs, Jane

    • jmgoyder says:

      Worst thing is how hard it is to get the humour back into our 3-way relationship. I try but it falls flat. Thanks for the hugs, Jane – Juliex

  2. You’re going to have to let the nurse help. And there will come a time when you won’t be able to handle having him come home. But you know that. Just have to accept that this is the way it is. Hard though.

  3. cuhome says:

    Oh this is so wrenchingly difficult to read–i cannot begin to imagine what it’s like for you & your son. All i can say is thank you for sharing, and my heart goes out to all of you.

  4. cuhome says:

    My heart goes out to all of you.

  5. gus57 says:

    My d-i-l lost her father to Alz this morning. A sweeping tide of tragedy engulfing the aged. So sad.We find it hard to let go of the bits that remain. God bless, Julie.

  6. magsx2 says:

    I think your son was right about the nurse, it is too much for you to do on your own, you could do yourself an injury. I am so sorry you are in this situation, I can only imagine how hard it must be for you and your son.

  7. Barb says:

    I’m sorry to have been gone a while and not know what you were going through. There are no easy answers or easy ways to deal with it. Guilt is such a shoddy gift that keeps on giving. May you have the strength to be kind to one another. And the courage to be kind to yourself. Big Hugs. Barb

  8. magicallymad says:

    God sweetheart, I can’t even imagine 😦

  9. eof737 says:

    Julia, my heart goes out to you. It can’t be easy at all… Hugs.

  10. victoriaaphotography says:

    Wish I could give you some words of comfort, but there’s really nothing anyone can do or say.

    But you shouldn’t feel guilty (of all emotions). You have done all you can under the circumstances. In fact you have done more than most spouses would have been able to do, so in that, you are very special and I’m sure that Anthony is very proud of your strength, achievements and ability to keep on keeping on.


  11. Okay, my last comment gently suggested asking the staff for help. Now I am not just gently suggesting it I am warning you. You are going to physically hurt yourself Jules in trying to everything for Anthony he wants you to. I know how hard it is to not feel like you are fullfilling those needs. But let me suggest a bot more strongly that should you hurt yourself trying to lift him alone you’ll not even be able to bring him back to the farm for the day.

    You have sadly a long road still ahead. Please take care of you.

    Hope I did not come across in any way felt as rude or uncaring.~

    • jmgoyder says:

      A friend rang me yesterday and said exactly what you are saying and I’m beginning to finally ‘get it’! Thanks again BB!

      • I know maybe its odd to develop a fondness online. But I am fiond of you and your family Jules. I need you to be okay so Ming is okay. I need you to be okay so that Jules is okay. I need you to be okay for Anthony. And again most of all I need you to be okay for you, always and most in the forefront.

        You’re an amzing strong women sweetie, but we all have our breaking points. I say enlist the help of the staff at the lodge so your time spent with your beloved Anthony is spent in more relaxing ways. Enjoyable ways.
        If this keeps up, the resentment builds up. Pretty soon you will not be able to talk yourself into going back.

        Gentle hugs for you special super woman!

      • jmgoyder says:

        I am fond of you too BB and thanks for your advice which matches pixilated2’s. I need a new strategy and yours sounds good – thank you so much. Love Julie

      • Ingrid says:

        BB and your friend are absolutely right and you know that too but your heart is having trouble catching up with your head!

  12. viveka says:

    Julia, I don’t understand how you manage to get your strength and power for all this – but maybe it’s something we have built in – that I haven’t had to use yet. Understand the frustration, the sadness and the pain that you all 3 go through or it’s more I try to understand. LIfe is a bitch – and it’s not always we can be a bitch back.

  13. So sad for you all.

    Perhaps next time it might be worth getting a nurse – if you are all going to end up angry and upset anyway, why not at least make it quick?

  14. artfulanxiety says:

    I know everyone else has said this, but it must be terribly difficult for you and my heart really sinks with yours when I read it. It must be so hard. Xox

  15. Julie – you are getting mad at yourself for being human – you try and you try and you try and that is enough – make sure your love and compassion does not affect your health–take care of you too

  16. This was so hard to read! My thoughts and prayers are with you all. I wish you didn’t feel guilt. Hugz, Diana

  17. pixilated2 says:

    Julie, I see you doing what my mother-in-law did to herself and can foresee the same calamity. Your desire to do all and be all for Anthony is going to hurt you physically, and you are already feeling it emotionally. Trust me on this one…

    Let go of the need for all this physical struggle and get the nurse. He says he doesn’t want the nurse, but let me tell you, he will really be in a bind it you are hurt and can’t do anything for him. He needs your heart and not your muscles. Let the nurses do the tough stuff. That is what they are paid for.

    You be there with the smiles, hugs, caresses and the love that he needs. I hate that you are so bogged down with trying to be superwoman, and I hate that this physical struggle is killing your ability to show him the love that you have for him. We all know it is there.

    Don’t rob yourself or him of what you most desperately need right now. Please let the nurses do their job.

    Love you,
    PS: Get a wheelchair for getting him from point A to point B. Yeah, he won’t like that I know, but it will save your back.

  18. terry1954 says:

    every word you wrote, i understand, this was so emotional and i understood all of your feelings

  19. Rhonda says:

    hugs and strength and love to you.

  20. Robyn Lee says:

    Oh Julie… this post just caused my throat to close 😦 I am so sad for what you are dealing with…and yes you are STRONG… and so human too. ‘Remorseless’… such a perfect title for this post. This disease is cruel and punishing ~ and so undeserved. I sit here wondering how one can ever accept or make peace with it… seems like an impossible goal to strive for.

    Julie, I wish I could give you a magical blanket of protection, to protect your psyche, your heart, your health. Please try to think of my imaginary blanket, and wrap it around you whenever you confront these impossible heart wrenching moments. Let it keep you warm and soothe your soul while you navigate the physical and emotional jungle that Anthony’s disease has sprung upon you and Ming. I send you my love and prayers, as I know there are no words that can make this all better. ~ Robyn

  21. Judith Post says:

    Hate to ask, but each disease has a progression. My mom’s had Alzheimer’s for at least 8 years now. Most people lose lots of ground between 8 and 10 years. Actually, most people don’t make it to 10 years (my hope for her and my sister. It would be so much kinder for both of them). I mean this in the best way. I hope Anthony’s final phase is as short as possible.

    • jmgoyder says:

      He is in last phase of PD technically but who knows how long. Must be hard with your mother – does your sister have it too? Hell.

      • Judith Post says:

        No, I must not have explained it very well. My sister’s taking care of my mom, and mom’s in a late phase of Alzheimer’s. Some days, Mom wants to go, asks Patty to help her “leave.” Then some days, she thinks she’s a kid on Bowser Ave., so just starting out. (Sorry it took me so long to reply. A storm knocked out 58% of the city’s energy on Friday afternoon. Just got ours back.)

      • jmgoyder says:

        Sorry – I get it now! Oh your storm sounds dreadful!

  22. A hug for you, and it’s so hard. But impatience is understandable.

  23. You ARE strong. Without a doubt.

  24. dou dou says:

    Oh dear…. OK, you have to get a nurse. Find out which one he is most comfortable with and get her to help when you visit. The nurse will be a part of your visits now, you have to accept that. And do what pixalated said and put his butt in a wheelchair!

    Would it be possible for him to come home for a night if the nurse came too? Or maybe they would let you stay the night with him? It has to be awfully tough on him too – bad all around but you can manage if you get some help :).

  25. WordsFallFromMyEyes says:

    jmgoyder, every time I read your days I just cannot help imagine me being in your shoes – you know, this happening to Daniel. And I feel. I instantly, deeply feel, for what you must be going through. I truly, truly wish you continued strength.

    And anger is not “bad”. Anger is, just like joy is. It is and needs voice too.

    sincere best

  26. dcwisdom says:

    Yes. I understand. I’m sorry. I cry for my memory and for your reality. It’s just crap. Sending you big Texas love and prayers, Love. Praying for your peace.

  27. bluebee says:

    You cannot give back what Anthony has lost, Julie, and underneath his irrational demands and anger, which are manifestation of his illness, he will know that is true – he knows that you cannot give him what he most wants, no matter how hard you try – get help when you need it

  28. From the comments above, you’re getting a lot of good advice, mostly not to try doing it all on your own. You carry enough burdens around, you don’t need to add the physical ones to them. I feel very sad for you and I admire your strength, and how you get back up every time you fall down.

  29. Fergiemoto says:

    Oh…I don’t know what to say, but I’m so sorry for what you are dealing with. Yes, you are strong.

    • jmgoyder says:

      I brought Ants home yesterday and he was noticeably deteriorated from even a few days ago – he has only just got used to the idea of the impossibility of staying the night but it now looks like even day visits will be too hard. I am just not physically strong enough to lift him out of chairs etc. and Ming was out – argh!
      Oh thanks so much for the kindness of your comment Fergiemoto! Juliex

  30. Fear of what next and guilt over what can’t be, will suck you dry if you let it. No matter what he says, the biggest gift you can give Anthony everyday is the love in your heart. He has care givers. Let them deal with the rest. Focus on giving him, you and son your love.

    • jmgoyder says:

      Thanks Linda – that has helped me a lot because Ants now requires two nurses to attend to his needs – the deterioration is quite rapid now. Juliexx

  31. I wish I could come over there and give you, Anthony, and Ming and few good hugs.

  32. misifusa says:

    Sending you a hug Julie…and sending one to Ming and to Anthony. Be kind to yourself dear friend. xo I understand.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: